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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.

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

Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use

THOMPSON, Stephen
CANNON, Mariah
WICKENDEN, Mary
2020

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This research brief details the main ethical challenges and corresponding mitigation strategies identified in the literature with regard to the ethical involvement of children with disabilities in evidence generation activities. Evidence generation activities are defined as per the UNICEF Procedure for Ethical Standards in Research, Evaluation, Data Collection and Analysis (2015), as research, evaluation, data collection and analysis. The United Nations Convention on the Rights of the Child (art. 12) states that children have the right to form and express views freely in all matters affecting them and that the views of the child must be given due weight in accordance with her/his age and maturity.

 

The United Nations Convention on the Rights of Persons with Disabilities (art. 7) states that children with disabilities must enjoy human rights and freedoms on an equal basis with other children, and that they have a right to express their views freely and should be provided with assistance where necessary to realize that right. The two conventions in general, and these two articles specifically, frame this research brief, which aims to encourage practitioners to explicitly consider ethical ways to involve children with disabilities in evidence generation.

 

The findings detailed in this summary brief are based on a rapid review of 57 relevant papers identified through an online search using a systematic approach and consultation with experts. There was a paucity of evidence focusing specifically on the ethical challenges of involving children with disabilities in evidence generation activities. The evidence that did exist in this area was found to focus disproportionately on high-income countries, with low- and middle-income countries markedly under-represented.

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.

The value of a short practical training course for newly qualified therapists working with children with cerebral palsy in South Africa

BAKUWA, Takondwa C
PILUSA, Sonti
SALOOJEE, Gillian
April 2020

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Background: Cerebral palsy (CP) is the most common and most complex disabling disorder in children. Newly qualified therapists are expected to manage CP despite feeling inexperienced and inadequately prepared. Short postgraduate practical training courses could potentially help bridge this readiness gap. However, the value of these short courses in addressing the knowledge and experience gap is unknown.

 

Objectives: To establish the value of a short practical training course on the self-perceived readiness of newly qualified South African trained therapists to work with children with CP.

 

Method: Secondary analysis of records on therapists’ immediate evaluation of a short practical training course on CP management was completed. The analysis included records from 11 courses collected over a 2-years period (2015–2017). Paired t-tests were used to determine the change in knowledge in the quantitative questionnaire. Qualitative data were analysed inductively to determine themes.

 

Results: The majority of therapists had their expectations met by the course. Therapists’ self-perceived level of knowledge about various aspects of CP after the course changed significantly. Therapists appreciated the adult teaching and learning methods, conducive learning environment, the relevant and organised content and holistic approach of the course. They demonstrated readiness to adopt positive attitudes, perceptions and practice following the course.

 

Conclusion: A short practical postgraduate training course in CP is valuable in addressing the self-perceived lack of readiness amongst therapists with little experience in this area. It is capable of improving the knowledge and changing attitudes, perceptions and practice intentions positively, and thereby potentially improving the quality of service offered to children with CP.

 

 

African Journal of Disability, Vol 9, 2020 

The development of education for learners with diverse learning needs in the South African context: A bio-ecological systems analysis

SMIT, Suegnet
PRESTON, Lynn D
HAY, Johnnie
February 2020

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Background: Prior to 1994, special education in South Africa was marginalised and fragmented; therefore, the new democratic government promoted inclusive education as a means to transform education in general and diverse education in particular. However, transformation in diverse education is seemingly moving forward at a snail’s pace – too slow to benefit all learners experiencing barriers to learning and development.

 

Objectives: This article serves a dual purpose: firstly, to apply a bio-ecological approach to highlight the historic development of diverse education and, secondly, to explore the interactive processes within the systemic levels in the South African education system, which affects the learner on the person dimension of the bio-ecological approach.

 

Method: A document analysis approach was utilised to collect information by exploring a large body of research literature, which included academic articles, reports, policies and policy reviews. Data were categorised within the systems of the bio-ecological model to determine successes and challenges at each level.

 

Results: Results from the bio-ecological systems analysis of related literature revealed not only many successes but also many challenges that inhibit change, growth and development in the South African education system, even more so for children experiencing barriers to learning.

 

Conclusion: The transformation process of change from what was to what should be, regarding diverse education, seems to be stuck at what is and not moving forward to what could be. It has not transformed significantly enough to fill the gap between reality and the envisaged aim or dream of quality education for all.

 

 

African Journal of Disability, Vol 9, 2020 

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.

Promoting employment opportunities for people with disabilities: Quota Schemes (Vol. 2)

INTERNATIONAL LABOUR ORGANISATION (ILO)
December 2019

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Employment quotas represent one of the most frequently used policy measures to promote work opportunities for persons with disabilities. Slightly over 100 countries around the world currently provide for employment quotas in their national legislation. While some countries have had employment quotas for many decades, others have introduced them recently, revised them or are planning to introduce them. There is no standard approach.

 

The previous publication (Volume 1) summarizes published information on quota schemes, to highlight elements of existing systems that are effective in promoting employment opportunities and making recommendations for approaches to take in introducing new systems or revising existing systems. In this document (Volume 2), an overview is provided of quota schemes by country and the extent to which quota schemes are in place alongside anti-discrimination legislation.

 

 

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

 

Estimating the intracluster correlation coefficient for trachomatous inflammation-follicular in population-based trachoma prevalence surveys: results from a meta-regression of 261 standardised pre-intervention surveys in Ethiopia, Mozambique, and Nigeria.

MACLEOD, Colin
et al
September 2019

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This study used a parametric bootstrap model to estimate intracluster correlation coefficient (ICC) for trachomatous inflammation-follicular (TF) in 1-9 year-olds, from 261 population-based trachoma prevalence surveys completed using standardised GTMP methodologies in Ethiopia, Mozambique, and Nigeria from 2012-2016.

Results from this study were used to draw up the most recent WHO 2018 recommendations on design effect (DE) estimates for sample size calculations for survey

 

American Journal of Epidemiology, 2019 Sep 11. pii: kwz196

doi: 10.1093/aje/kwz196

 

 

Labour Market Assessment - Inclusion Works Bangladesh

HUDA, Parveen S
SARWAR, Rubaiyath
IMRAN, Muhammad
August 2019

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This rapid labour market assessment was undertaken in the intervention areas of Dhaka, Gazipur, Tangail, Chattogram and Khulna. The objectives were to analyse current scenario of the labour market, identify job opportunities for persons with disabilities, skills requirement for those jobs, risks and barriers of getting those jobs, etc. This report explains the facts and findings of the assessment and provides recommendations to make Inclusion Works more effective in their interventions. The assessment consists of two parts – secondary literature review and qualitative study.

 

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.

Labour Market Assessment - Inclusion Works Uganda

AHAIBWE, Gemma
NTALE, Anita
ODOKONYERO, Tonny
August 2019

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This labour market assessment (LMA) has been conducted to collect a baseline to inform the implementation of the Inclusion works project.  The LMA evaluated the economic trends and patterns and identified growth sectors and subsectors with a high propensity for job creation. Using value chain analysis, the LMA identified the kind of jobs available in the selected subsectors and the type of skills and educational qualifications required to fill them. The study also analysed the flows and stocks of education that the workforce possess to match the demand in the selected subsectors. Furthermore, the LMA assessed functionality of labour market coordination system and how existing policies and structures influence the labour market.

 

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.

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)

Labour Market Assessment - Inclusion Works Kenya

GESONGO, Mugita
BARAZA, Austen
July 2019

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This is a rapid assessment of the Kenyan labour market which was commissioned to understand how the labour market functions in Kenya within the context of disability. This assessment provided opportunity to validate existing data on employment of persons with disabilities thus generating a solid baseline on which to anchor the programme’s targets and assumptions.

 

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.

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