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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.

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.

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 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.

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.

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 Nigeria

Prof ADEBAYO, A. A.
SHIBKAU, Hadjara
OLIYE, Funmilayo
July 2019

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This labour market assessment (LMA) was important to ensure the Inclusion Works programme interventions are strategic and provide the most optimal way to address unemployment challenges facing persons with disabilities. This LMA was designed to answer key questions associated with perspectives on: policy; coordination systems; employer; training and recruitment service providers; and job seekers. To address the questions, the assessment attempted to identify; the growing sectors and job opportunities in Lagos, Abuja and Jigawa States, the demand and supply of skills for enabling persons with disabilities to compete for current and future job opportunities, and understanding barriers for employers and persons with disabilities with regards to disability inclusive formal employment while focusing on both current and future opportunities in formal and informal sectors.

 

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 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.

Access to social protection among people with disabilities: Mixed methods research from Tanahun, Nepal

BANKS, Lena
et al
April 2019

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This study explores participation of people with disabilities in social protection programmes, with Tanahun District of Nepal as the study setting. This research uses mixed methods to assess coverage (through direct survey), how coverage varies amongst people with disabilities (e.g. by gender, impairment type), as well as challenges and facilitators to enrolling in or using relevant social protection programmes. This research benefits from a population-based study design and from the use of the Washington Group question sets

 

The European Journal of Development Research (2019) 31:929–956

https://doi.org/10.1057/s41287-019-0194-3

Using the Washington Group Questions in humanitarian action (learning toolkit on disability data collection)

January 2019

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Humanity & Inclusion has created a learning toolkit to improve the collection of quality data on persons with disabilities and improve its use by humanitarian organisations.

 

Until now, existing guidance on the Washington Group Questions (WGQs) has been specific to national data collection efforts on persons with disabilities. To address the lack of guidance for humanitarian actors, Humanity & Inclusion (HI) is launching a learning toolkit on collecting data in humanitarian action, which includes an e-learning, a training pack for enumerators and various supporting resources that can all be found on the HI website.

 

Gathering evidence on the use of the WGQs in humanitarian action:

To respond to the need to collect, analyse and use data on persons with disabilities in humanitarian action, HI has been implementing a project, funded by the UK Department for International Development, to test and assess the use of the WGQs in humanitarian action. An action-research was carried out with over 30 humanitarian partners in Jordan, the Democratic Republic of Congo and the Philippines, with the evidence used to develop learning materials.

 

Development of a learning toolkit for humanitarian actors:

In addition to the findings of the action-research, HI gathered inputs from over 30 humanitarian organisations working in 22 countries to inform the design of the learning toolkit. Specific focus was given to the development of open source materials that would be accessible with screen readers, on mobile phones, and in hard to reach locations. The content was then informed by selected subject matter experts in inclusive humanitarian action and data collection.

 

What is included in the toolkit?

An e-learning on Collecting Data for the Inclusion of Persons with Disabilities in Humanitarian Action – The Application of the WGQs providing an entry point for humanitarian actors who would like to understand how to plan for and use the WGQs.

A Training Pack for enumerators giving guidance, session plans and activities to deliver training on using the WGQs (developed in collaboration with RedR UK).

Supporting resources providing practical guidance on the application of the WGQs in humanitarian contexts.

 

Who is this for?

The toolkit is tailored to a full range of humanitarian actors who would like to understand how to use the WGQs in their own work and organisations. The content has also been designed to provide technical guidance for programme and technical staff: with a practical focus on different topics relevant for the use of the WGQs –from the human rights based approach that underpins them, to their planning, use and the analysis of the data produced.

 

Where is the Toolkit available?

The e-learning is available now on disasterready.com and on Kayaconnect.org (accessible for mobile phones and tablets). Organisations interested in hosting the e-learning are welcome to contact the project team members. Toolkit resources and more information about the project are available for download in the project webpage.

Disability and global health: Special issue of International Journal of Environmental Research and Public Health

KUPER, Hannah
POLAK, Sarah
Eds
2019

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Papers included in this special issue are:

 

More at risk: how older people are excluded in humanitarian data

TANYANG, Gaynor
VENTURES, Lumina
2019

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This report evaluates existing policies and practices on how older people have been excluded from data in disaster preparedness and humanitarian responses in Bangladesh, India, Nepal, Pakistan, Sri Lanka, Cambodia, Indonesia, Myanmar, the Philippines, Thailand and Vietnam.

In order to evaluate existing policies and practices in the collection of inclusion data, the research employed two main methods: a review of documents and a survey. The review of documents was conducted in three stages: a global literature review, followed by a policy review and a practice review. The survey analysed the responses of 72 respondents from 10 countries .

Older people’s perceptions of health and wellbeing in rapidly ageing low- and middle-income countries

ALBONE, Rachel
2019

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This report presents the findings of an analysis of data collected by HelpAge International and its network members using HelpAge’s Health Outcomes Tool. The tool is designed to collect data to better understand health and care in older age, and to measure the impact of HelpAge’s health and care programmes. It was developed in response to the challenges posed by the lack of data on older people’s health and care, particularly in low- and middle-income countries, and the resulting lack of understanding about how best to provide age, gender and disability sensitive services for older women and men. The tool was used between 2014 and 2017 in nine low- and middle-income countries across Africa, Asia and Latin America,1 and gathered data from over 3,000 older people. The findings are presented here in the context of the current debate and evidence on older people’s right to health.

This report explores three different areas in relation to ageing and health: older people’s access to health services; availability of care and support; and the impact both health, and care and support services have on older people’s health status, functional ability and wellbeing.

 

 

 

Rating early child development outcome measurement tools for routine health programme use

BOGGS, Dorothy
et al
January 2019

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Background identification of children at risk of developmental delay and/or impairment requires valid measurement of early child development (ECD). ECD measurement tools were systematically assessed for accuracy and feasibility for use in routine services in low income and middle-income countries (LMIC).

Building on World Bank and peer-reviewed literature reviews, available ECD measurement tools for children aged 0–3 years used in ≥1 LMIC were identified and matrixed according to when (child age) and what (ECD domains) they measure at population or individual level. Tools measuring <2 years and covering ≥3 developmental domains, including cognition, were rated for accuracy and feasibility criteria using a rating approach derived from Grading of Recommendations, Assessment, Development and Evaluations

A comparison of disability rights in employment: Exploring the potential of the UNCRPD in Uganda and the United States

OJOK, Patrick
GOULD, Robert
2019

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The disability employment policy systems in the US and Uganda are compared, and areas identified to improve implementation by examining the broader socio-cultural contexts that have shaped disability policy and practices of the two countries over time. Using the United Nations Conventions on the Rights of Persons with Disabilities (UNCRPD) as the overarching analytical framework, the analysis is framed within the discussion of the right to employment, as both countries are recognized for policy advances in this domain, but continue to experience low labor market participation for persons with disabilities. It identifies three critical areas that impact the realisation of disability rights in each context: ideological frameworks; hiring and retention initiatives; and state level supports. Ultimately, it considers the limitations of the rights based framework for actualising employment rights in the context of limited state and individual resources. 

 

Disability and the Global South, 2019, Vol.6, No. 2

 

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