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Estimated prevalence of disability and developmental delay among pre‐school children in rural Malawi: Findings from ‘Tikule Limodzi’, a cross‐sectional survey

MURPHY, Rachel
et al
January 2020

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This study measured and compared the prevalence of disability and developmental delay among children attending preschool centres in rural Malawi. A cross-sectional survey was conducted in 48 preschool centres in Thyolodistrict, Malawi. Data were collected from parents or guardians of 20 children per centre. Disability was ascertained using the Washington Group/UNICEF Child Functioning Module. Child development was measured using the language and social domains of the Malawi Development Assessment Tool. A total of 960 children were enrolled; 935 (97.4%) children were assessed for disability and 933 (97.2%) for developmental delay; 100 (10.7%) children were identified as having a disability

 

Child Care Health Dev. 2020;46:187–194.
https://doi.org/10.1111/cch.12741

Disability measurement in household surveys : A guidebook for designing household survey questionnaires (English). LSMS guidebook.

TIBERTO, Marco
COSTA, Valentina
January 2020

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This Guidebook supports the implementation of the Washington Group Short Set (WG-SS) – a set of questions designed to identify (in a census or survey format) people with a disability – in multi-topic household surveys, towards improving the collection of disaggregated disability data. The first section presents an overview of the disability definitions in the sociopsychological literature, exploring how disability is defined and who is considered disabled. The second section looks at three different methods for capturing disability in multi-topic household surveys: the Washington Group (WG) question sets, the World Health Organization (WHO) survey instruments for disabilities, and the Demographic and Health Surveys (DHS) module on disabilities. The third section presents the six core WG-SS functional domains, ‘seeing’, ‘hearing’, ‘walking’, ‘cognition’, ‘selfcare’, and ‘communication’, that are intended for the general population five years of age and above. Finally, the Guidebook offers a series of recommendations for ensuring the improvement of disability data collection in multi-topic household survey.

Integrating geospatial data and measures of disability and wealth to assess inequalities in an eye health survey: An example from the Indian Sunderbans

MOHANTY, Soumya
et al
December 2019

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The Sunderbans are a group of delta islands that straddle the border between India and Bangladesh. For people living on the Indian side, health services are scarce and the terrain makes access to what is available difficult. In 2018, the international non-governmental organisation Sightsavers and their partners conducted a population-based survey of visual impairment and coverage of cataract and spectacle services, supplemented with tools to measure equity in eye health by wealth, disability, and geographical location. Two-stage cluster sampling was undertaken to randomly select 3868 individuals aged 40+ years, of whom 3410 were examined

 

Int J Environ Res Public Health. 2019 Dec; 16(23): 4869

doi: 10.3390/ijerph16234869

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.

Unimproved water sources and open defecation are associated with active trachoma in children in internally displaced persons camps in the Darfur States of Sudan

MACLEOD, C K
October 2019

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To estimate the proportion of children with trachomatous inflammation—follicular (TF) and adults with trachomatous trichiasis (TT) in internally displaced persons (IDP) camps in the Darfur States of Sudan and to evaluate associated risk factors. 

A random-effects hierarchical model was used to evaluate factors associated with TF and TT. Thirty-six IDP camps were represented in the survey data in which 1926 children aged 1–9 years were examined, of whom 38 (8%) had TF. Poor sanitation, younger age and living in a household that purchased water from a vendor were associated with TF in children aged 1–9 years.

 

Transactions of The Royal Society of Tropical Medicine and Hygiene. 2019 Oct 11;113(10):599-609

DOI:10.1093/trstmh/trz042

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

 

Bridging the mobile disability gap in refugee settings

DOWNER, Matthew
September 2019

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This case study highlights refugees with disabilities’ access to mobile services and the benefits and challenges associated with using these services in three different humanitarian contexts. The analysis is based on a representative survey of refugees in three contexts: Bidi Bidi refugee settlement (Uganda), Kiziba refugee camp (Rwanda) and with urban refugees in Jordan. It also includes qualitative data drawn from two focus groups conducted with refugees with disabilities in Bidi Bidi and Kiziba. The survey used the Washington Group Questions (WGQs) to assess prevalence of disability amongst the refugee population

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

 

 

Operational adaptations of the trachoma pre-validation surveillance strategy employed in Ghana: successes and challenges

SENYONJO, Laura
et al
September 2019

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In 2009 Ghana began to design a trachoma pre-validation surveillance plan, based on then-current WHO recommendations. The plan aimed to identify active trachoma resurgence and identify and manage trichiasis cases, through both active and passive surveillance approaches. This paper outlines and reviews the adaptations made by Ghana between 2011 and 2016

Infectious Diseases of Poverty volume 8, Article number: 78 (2019)

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)

Study on explosive hazard victim reporting and data management processes in Iraq

NIJHOLT, Sarah
April 2019

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Handicap International (HI) commissioned a study on on explosive hazard victim reporting and data management processes in Iraq. The overall objectives of the study were to:

  • Understand what explosive hazard victim reporting and data management processes exist in Iraq;
  • Identify who is collecting such information, for which reasons and how it is being shared, and how it is being officially used;
  • Identify whether international victim data collection good practices and reporting standards are being followed up, and make concrete recommendations to help meet the standards;
  • Understand the successes, shortfalls, and challenges in data collection and information sharing;
  • Identify the needs of the data collection community in terms of ensuring sufficient victim reporting and data collection;
  • Identify if and how the data on victims is being collected and used by government authorities and the international fora.

 

Desk research was carried out and data collection took place in March 2019 in Erbil, Baghdad and Ninewa governorates in Iraq. In total, the qualitative researcher spent 3 days in Erbil, 4 days in Baghdad, and 6 days in Ninewa governorate to conduct interviews through a snowball approach. In total, 22 interviews were conducted with a variety of stakeholders, including humanitarian mine action actors, government officials, hospital directors, police and community leaders. This report provides an overview of the main findings.

Global survey of inclusive early childhood development and early childhood intervention programs

VARGAS-BARON, Emily
et al
March 2019

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To learn more about the current status of IECD (inclusive early childhood development) and ECI (early childhood intervention) programs, three international organizations collaborated to conduct a global survey: RISE Institute; UNICEF; and the Early Childhood Development Task Force (ECDtf), which is within the Global Partnership on Children with Disabilities (GPcwd). This large survey was designed in 2016, was conducted in 2017, and the report was prepared in 2018.

 

The main objectives of the survey were to:

  • Map current implementation of IECD and ECI programs and related activities;
  • Describe key IECD and ECI program features;
  • Identify gaps and challenges in providing accessible IECD and ECI services;
  • Document factors associated with successful implementation and scale-up;
  • Generate recommendations to inform future policy and program development and national planning and implementation efforts.

 

The online survey targeted a range of programs, and activities including IECD and ECI services; rehabilitation and habilitation services; humanitarian, emergency, and child Global Survey of Inclusive ECD and ECI Programs 8 protection services; advocacy campaigns; and research and evaluation projects. 

 

Program respondents provided information on 426 programs that were implemented in 121 countries. 

Leaving no-one behind: Building inclusive social protection systems for persons with disabilities

KIDD, Stephen
et al
February 2019

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How to make social protection systems and schemes more inclusive of persons with disabilities is examined. Social protection can play a key role in empowering persons with disabilities by addressing the additional costs they face, yet the majority of persons with disabilities are currently excluded from schemes.

The report identifies a wide range of barriers persons with disabilities experience in accessing social protection to be overcome. It calls for better data on disability, disability-specific and old age pension schemes and expanded coverage; adapting communications about social protection schemes; and improving disability assessment mechanisms. The research underpinning the report comprised involved a review of the literature, an analysis of household survey datasets, and consultations with key stakeholders and persons with disabilities in seven low- and middle-income countries: Brazil, India, Kenya, Mauritius, Rwanda, South Africa and Zambia.

Topics covered include:

  • Types of social protection schemes for persons with disabilities
  • Levels of investment in social protection for persons with disabilities
  • Coverage of persons with disabilities by social protection
  • Impacts of social protection on persons with disabilities
  • Barriers to accessing social protection and measures to address them
  • Links between social protection schemes and other public services

HIV & disability in West Africa: A combined analysis of 4 studies conducted in Burkina Faso, Niger, Guinea Bissau and Cape Verde (2019) - VIH & Handicap en Afrique de l’Ouest : Une analyse combinée de 4 études conduites au Burkina Faso, Niger, Guinée Bis

DE BEAUDRAP, Pierre
2019

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This paper includes four studies which seek to better understand the situation by HIV-related situation of disabled men and women living in West Africa. 
Using epidemiological investigation, qualitative interviews and collections of testimonies, these studies offer insight into the vulnerability of people with disabilities in the area of ​​sexual health
 

Access to social organisations, utilisation of civil facilities and participation in empowerment groups by people with disabilities in Maharashtra, India

GOVINDASAMY, Karthikeyan
DHONDGE, Suresh
DUTTA, Ambarish
MENDIS, Tina
2019

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This survey aimed to assess the baseline level of access to social institutions, utilisation of civil facilities and participation in empowerment schemes by people with disabilities in Amravati district of Maharashtra State, India. Sixty villages from two blocks in Amravati district were randomly selected for the survey. From these villages, 522 households were sampled and 3056 individuals were surveyed. Interviews were conducted with 590 individuals with disability from among the surveyed population. 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Unmet needs and use of assistive products in two districts of Bangladesh: Findings from a household survey

PRYOR, Wesley
NGUYEN, Liem
ISLAM, Qumrun Naher
JALAL, Faruk, Ahmed
MANJULA, Marella
December 2018

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Access to assistive products (AP) is an under-researched public health issue. Using an adaptation of a draft World Health Organization tool—the ‘Assistive Technology Assessment—Needs (ATA-N)’ for measuring unmet needs and use of AP, we aimed to understand characteristics of AP users, self-reported needs and unmet needs for AP, and current access patterns in Bangladesh. The ATA-N was incorporated in a Rapid Assessment of Disability (RAD), a population-based survey to estimate prevalence and correlates of disability. In each of two unions of Kurigram and Narsingdi districts, 60 clusters of 50 people each aged two years and older were selected using a two-staged cluster random sampling process, of whom, 4250 (59% Female; 41% Male) were adults, including 333 using AP. We estimate 7.1% of the studied population used any AP. AP use is positively associated with age and self-reported functional difficulty. The proportion of people using AP is higher for mobility than for sensory and cognitive difficulties. Of all people with any functional difficulty, 71% self-reported an unmet need for AP. Most products were home or self-made, at low cost, but provided benefits. Needs and unmet needs for AP are high, especially for people with greater functional difficulties. Assessing unmet needs for AP revealed important barriers to scale that can inform policy and practice.

Int. J. Environ. Res. Public Health 2018, 15(12), 2901;
doi:10.3390/ijerph15122901

At risk of exclusion from CRPD and SDGs implementation: Inequality and persons with deafblindness. Initial global report on situation and rights of persons with deafblindness

JENSEN, Rune
et al
September 2018

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Representing between 0.2% to 2% of the population, persons with deafblindness are a very diverse yet hidden group and are, overall, more likely to be poor and unemployed, and with lower educational outcomes. Because deafblindness is less well-known and often misunderstood, people struggle to obtain the right support, and are often excluded from both development and disability programmes. This initial global report on the situation of persons with deafblindness seeks to start a dialogue between international disability rights and development stakeholders, and is based on research undertaken by the World Federation of the Deafblind (WFDB) combining the largest population-based analysis of persons with deafblindness conducted to date (disaggregation of 22 population-based surveys from low, middle and high-income countries), an academic literature review, two surveys conducted among members and partners of WFDB and Sense International. Women and men with deafblindness from across the world took part in the Helen Keller World Conference in June 2018, and were consulted to confirm the findings and elaborate on the recommendations for this report.

 

Data and discussion are presented on people with deafblindess and: inequality; poverty; work; education; health; participation on political and public life; and social life. Datasets are included. 

 

Access to assistive products in Kurigram and Narsingdi, Bangladesh. Policy brief 2.

HUMANITY & INCLUSION BANGLADESH
et al
August 2018

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This ‘policy brief’ outlines findings on Assistive technology and Products (AP) needs, unmet needs and access patterns arising the Rapid Assessment of Disability (RAD) study conducted in 2016 and 2017, in partnership between the Bangladesh Bureau of Statistics (BBS) and Humanity & Inclusion (HI) Bangladesh, with technical oversight from the Nossal Institute for Global Health, University of Melbourne, Australia. The study was part of the HI project: Towards Global Health: Strengthening the Rehabilitation Sector through Civil Society funded by the European Union. Findings from the 4254 adults surveyed in the two districts are reported here.

 

The purpose of this component of the RAD study was to learn about the usage of AP, characteristics of AP users, barriers to use of AP, unmet and met needs of AP, and to highlight major policy implications for AP service provision, in two target areas of Kurigram and Narsingdi. The survey includes an adapted version of Washington Group (WG) ‘short set’ of Disability Questions. A modified version of the WHO’s draft Assistive Technology Assessment Tool (needs module) – or the ‘ATA-needs’, was also implemented. Findings from this study also helped modify and improve the draft ATA-needs tool

Promote, Protect and Monitor 2017 Update survey on Article 33 (2) of the Convention on the Rights of Persons with Disabilities

AICHELE, Valentin
August 2018

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Article 33 (2) of the CRPD requires state parties to have a structural framework in place to promote, protect and monitor the implementation of the Convention on the Rights of Person with Disabilities (CRPD) at the national level. This “2017 Update Survey”, conducted by the German Institute for Human Rights, was done to identify the current situation how state parties implement these provisions. National Human Rights Institutions (NHRIs) from all continents participated in the survey. A comparison of the results of the 2017 Update Survey with those of similar survey conducted in 2011 indicates that there is a positive trend towards the strengthening of the role of National Human Rights Institution in the context of the CRPD in terms of numbers – either as the bearers of sole responsibility or responsibility shared with others. 

Annexes are provided containing concluding observations, the questionnaire used and a table of survey responses.

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