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Disability data collection: A summary review of the use of the Washington Group Questions by development and humanitarian actors

QUIGLEY, Nolan
et al
October 2018

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The Washington Group Questions on Disability are rapidly emerging as the preferred data collection methodology by the global community for national data collection efforts on disability. However, more and more development and humanitarian actors are now using the methodology in their own data collection efforts. This is beyond the original purpose of the questions, which was to generate usable data for governments. Leonard Cheshire and Humanity & Inclusion, two international charities focussed on disability and inclusion, have worked together to share learnings of recent research studies. These studies aim to understand how the Washington Group Questions (WGQ) have been used by development and humanitarian actors and the impact of using the methodology. This summary report outlines the key findings, analysis and conclusions about the application of the Washington Group Questions in a range of contexts. The report concludes with a number of recommendations for different stakeholders.

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

2030 Agenda for sustainable development: Selected SDG indicators disaggregated by disability status

WASHINGTON GROUP ON DISABILITY STATISTICS
October 2018

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In light of the importance of disability data collection and the disaggregation of Sustainable Development Goal (SDG) outcome indicators by disability status, the Washington Group on Disability Statistics (WG) undertook an exercise to review, among WG member countries, the extent to which data on SDG indicators currently available can be disaggregated by disability status. Requests for disaggregated SDG data for 13 selected indicators were sent to 146 member countries. 48 countries responded and 39 provided data. Response data is tabulated and discussed.

Effect of Abacus Training on Numerical Ability of Students with Hearing Loss

JADHAV, Atul Kaluram
GATHOO, Varsha Shrikant
2018

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Purpose: The study focussed on the effect of Abacus training on numerical ability (comprising of counting and mathematical operations) of children with hearing loss.

 

Method: 90 students with hearing loss were sampled from 6 special schools in Mumbai, India. A quasi- experimental study was employed using two group pre-test and post-test design. Data were collected using the Numerical Ability Test (NAT) as an instrument. Six null hypotheses based on the objectives were formulated and tested at 0.05 level of significance using t-Test - Assuming Equal Variances.

 

Results: The findings revealed that the experimental group which was instructed through Abacus showed higher proficiency in numerical ability as compared to the control group instructed through the conventional method. Gender as a variable seems to influence the mean achievement of numerical ability of students with hearing loss. While girls and boys did not differ in simple tasks such as counting, boys were found to be better in mathematical operations and overall numerical ability.

 

Conclusions: The Abacus teaching method results in higher mathematical achievements among students with hearing loss. Gender also plays an important role in mathematical learning, as evidenced by boys demonstrating more numerical ability than girls in the study sample.

Cross-Cultural Adaptation and Evaluation of Psychometric Properties of Persian Version of Supports Intensity Scale among Adults with Intellectual and Developmental Disabilities

SALEHI, Sajed
JAVADIPOUR, Sheyda
NASSADJ, Gholamhossein
HAGHIGHI, Mohammad Hossein
SABOOR, Shiva
SHAKHI, Kamal
2018

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Purpose: This study was designed to translate and assess the psychometric properties of Supports Intensity Scale among adults with intellectual and developmental disability in Ahvaz and Tehran, Iran.

 

Method: The cross-sectional study was carried out in two stages. The first stage consisted of the forward-backward translation of Supports Intensity Scale - Adult Version) SIS-A(. In the second stage, 197 people with intellectual and developmental disabilities were recruited in order to assess the internal consistency and test-retest reliability, concurrent and content validity of SIS-A. The confirmatory factor analysis (CFA) was performed to approve the seven-factor model of the instrument.

 

Results: The intra-class correlation coefficient values varied between 0.85 and 0.99 (very good to excellent). All subscales of the SIS-A showed Cronbach’s alpha above 0.70. Correlation coefficient between SIS-A and Barthel index was about -0.65, which shows excellent concurrent validity of SIS-A. The findings showed SIS-A had high ability to discriminate between groups with different IQ (p<0.05). There was no significant correlation between SIS-A and the age of participants (p>0.05). The result of CFA confirmed that the seven-factor model of SIS-A is the fittest pattern for SIS-A.

 

Conclusion: The results indicated that the Persian version of SIS-A is a valid and reliable instrument to assess function and disability among people with intellectual and developmental disability.

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. 

 

Including children with disabilities in preschool education. Experiences of Plan International Mozambique

PLAN INTERNATIONAL
August 2018

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Between 2015 and 2017, Plan International Mozambique worked together with communities supporting 106 preschools in rural Mozambique. In late 2016, an approach was piloted in 18 community-based preschools to support them to be disability-inclusive. The overall goal was to increase the number of children with disabilities enrolled in Early Childhood Care and Education (ECCE) centres delivering quality early learning opportunities. The pilot took place over a 12 month period. Summarised findings about the current status of inclusion in preschool programmes run by Plan International Mozambique, case studies and lessons learned about the inclusion of children with disabilities in these programmes are provided.  

 

They describe five aspects that need to be considered to remove barriers and ensure that children with disabilities can access and benefit from early childhood education:

1. Work directly with the parents of children with disabilities

2. Address individual physical and medical needs of children with disabilities

3. Build the skills and confidence of caretakers

4. Equip and build a strong implementing team

5. Build evidence on what is happening and what (doesn’t) work

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

Improving educational outcomes for people with disabilities in low and middle-income countries: why does it matter and what works?

KUPER, Hannah
SARAN, Ashrita
WHITE, Howard
July 2018

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The studies included in this Rapid Evidence Assessment (REA) are taken from the Disability Evidence and Gap Map (EGM) prepared by the Campbell Collaboration for the UK Department for International Development (DFID) under the auspices of the Centre for Excellence for Development Impact and Learning (CEDIL). Eligible studies included systematic reviews and impact evaluations published in English from 2000 onwards that assessed the effectiveness of interventions for people with disabilities in LMICs. Qualitative studies, process evaluations, and non-impact evaluations (e.g. crosssectional surveys) were not eligible for inclusion. Quality grading was applied to the literature, so that assessment could be made of where there was strong evidence and where evidence was limited or missing. The studies were grouped by education sub-outcomes related to different stages in education across the life course; that is: early intervention, primary education, secondary education, non-formal education, and lifelong learning. 

 

There were 24 eligible individual studies, including studies conducted in the Middle East (10), Asia (7), and Africa (5), one from Latin America, as well as one multicountry study

The disability data portal

July 2018

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The Disability Data Portal provides a snapshot of the data globally available on people with disabilities in 40 countries. The portal also identifies where there are gaps in the current body of data. 

The portal was designed for the Global Disability Summit, held on 24 July 2018, and focusses on data relating to four thematic areas: inclusive education, stigma and discrimination, technology and innovation, and economic empowerment. 

The portal presents key development indicators relevant to the Summit themes, mostly drawn from the Sustainable Development Goals (SDGs), along with others relevant to the UN Convention on the Rights of Persons with Disabilities (CRPD)

Removing barriers - The path towards inclusive access. Disability assessment among Syrian refugees in Jordan and Lebanon. Lebanon report

ASAI, Yahoko
et al
July 2018

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Humanity & Inclusion (HI) and iMMAP conducted a study concerned with the lack of disability data in the Syria crisis context,  which aimed to:

  • Provide statistically reliable prevalence of disability as well as disability disaggregated data indicators on access to services.
  • Increase understanding of the situation of Syrian refugees with disabilities and their households, compared to their peers without disabilities, in relation to the access to services including education, and key barriers experienced in accessing these services.
  • Recommend inclusive actions to be prioritized by humanitarian actors.

The study conducted a literature review, quantitative data collection as well as qualitative data collection. Quantitative data was collected from 2,495 persons of randomly sampled 506 households in the urban setting in Bar Elias as well as Informal Tented Settlements (ITS) in Bar Elias and Arsal in December 2017. Fourteen Key Informant Interviews (KII) were also conducted in December 2017 to elicit deeper insights on the educational situation of children with and without disabilities.

Anticipated Barriers to Implementation of Community-Based Rehabilitation in Ribeirão Preto, Brazil

FIORATI, Regina Celia
CARRETTA, Regina Y Dakuzaku
JOAQUIM, Karine Pereira
PLACERES, Aline Ferreira
JESUS, Tiago Silva
2018

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Purpose: Disability is a global health and a global development concern. To address both issues, a community-based rehabilitation (CBR) approach is increasingly recommended to meet a spectrum of needs, especially for people with disabilities. It is first necessary to understand the perceptions of local, frontline providers, in order to design effective measures for implementing CBR programmes. This paper aimed to understand the conceptions of Primary Healthcare Providers (PHPs) - serving a sub-urban, socially-vulnerable territory in Brazil - about: 1) disability, 2) rehabilitation, and 3) the possible local implementation of a CBR strategy, including any anticipated barriers.

 

Method: Cross-sectional, exploratory qualitative research was based on focus groups conducted between 2013 and 2016. It involved a total of 78 PHPs serving the western region of the Ribeirão Preto municipality in São Paulo, Brazil. Data analysis was based on Habermas’ critical hermeneutics approach.

 

Results: PHPs understood disability mostly within the biomedical paradigm. Similarly, the predominant conception of rehabilitation was focussed on enabling individuals’ capacity, more than their environment. For local CBR implementation, the barriers that were anticipated were: 1) difficulties in managing and running action across sectors, and 2) the broader socio-political environment that hardly empowers civil society and is affected by power differentials.

 

Conclusion and Implications: While local PHPs identified important CBR implementation barriers which are contextual in nature, the predominant conceptions of disability and rehabilitation (i.e., biomedical, impairments-based) also act as a barrier. Contextual and cognitive barriers must both be addressed when envisioning a local CBR implementation

Education and disability: Analysis of data from 49 countries

UNESCO
March 2018

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Persons with a disability are among the population groups most likely to suffer from exclusion from education but data that permit an analysis of the links between disability and education remain scarce. This paper examines educational disparities linked to disability based on data from 49 countries and territories for five education indicators:

● Proportion of 15- to 29-year-olds who ever attended school

● Out-of-school rate (primary school age, lower secondary school age)

● Completion rate (primary education, lower secondary education)

● Mean years of schooling of the population 25 years and older

● Adult literacy rate (population 15 years and older)

 

The education indicators were calculated with data from three sources, collected between 2005 and 2015: Demographic and Health Surveys (DHS) sponsored by USAID, School-to-Work Transition Surveys (SWTS) by ILO, and population census data compiled by IPUMS-International. Comparability of the data across countries is limited because only some of the surveys and censuses used questions developed by the Washington Group on Disability Statistics to identify persons with a disability. The accuracy of the indicator estimates is also affected by sampling and non-sampling errors in the data, the small sample size of many of the surveys that were analysed, and the relatively small proportion of persons with disabilities in each country’s population. Moreover, because of the scarcity of national data, it is currently not possible to generate statistics on the status of persons with disabilities with regard to education that are regionally or globally representative.

Information Paper No.49

 

Participation Restriction due to Arm and Leg Motor Impairment after Stroke Rehabilitation in the Tamale Metropolitan Area, Ghana

TWUM, Frank
DOGBE, Joslin Alexander
EDUSEI, Anthony Kwaku
AMPRATWUM, Joseph
2018

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Purpose: The study was conducted to examine the relationship between arm and leg motor impairment in stroke survivors and participation restriction, post rehabilitation, within the Tamale metropolis.

 

Method: The participants were 102 stroke survivors from the Tamale metropolitan area, who had undergone at least 3 months of rehabilitation. Upper limb motor assessment was followed by lower limb motor assessment based on the Manual Muscle Test. Levels of participation restriction were measured using the London Handicap Scale. Correlation analysis of motor impairment and participation restriction were done using Spearman rank correlation analysis.

 

Results: The mean age of post-stroke participants was 62.08 years (95% CI= 59.77-64.39), with men comprising 67.65% and 32.35% women. The Spearman rank correlation co-efficient between arm motor impairment and participation was 0.8343, depicting a strong positive relationship between the aforementioned variables. The correlation between leg motor impairment and participation yielded 0.8013. Conversely, leg motor impairment was found to have a stronger relationship with participation restriction in comparison to arm motor impairment.

 

Conclusion and Implications: The strong relationship between limb motor impairment and participation restriction suggests that clinicians and disability experts involved in rehabilitation should take cognisance of the social implication of motor impairment in order to make informed decisions. Further to this, arm and leg assistive devices could be useful in reducing the levels of participation restriction among persons with stroke within the Tamale metropolis.

 

Limitations: A major limitation is that motor impairment was assessed solely on the ability to perform voluntary movement (muscle power). Sensory disturbances and motor coordination difficulties also have the potential to influence participation restriction, so the exclusion of stroke survivors who are unable to communicate implies that external validity of the research is limited.

Measuring the prevalence of violence against women with disabilities

VAUGHAN, Cathy
et al
February 2018

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This short report summarises discussions during a meeting concerning what is known about violence against women with disabilities and the evidence gaps, with a focus on Asia and the Pacific. It includes a brief overview of the current situation and suggested ways forward for researchers, the kNOwVAWdata initiative and other regional and global initiatives to measure prevalence of violence against women with disabilities, and for relevant regional and national institutions

Disability data in humanitarian action - Factsheets

HUMANITY & INCLUSION (HI)
2018

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Four factsheets concerned with Washington Group Questions (WGQ) produced in conjunction with the Disability Data in Humanitarian Action programme.

 

Aspects addressed are: collecting data at the household level; collecting data on persons with mental health difficulties and understanding temperality and causality when using the WGQs.

 

Disability, health and human development

MITRA, Sophie
2018

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This open access book introduces the human development model to define disability and map its links with health and wellbeing, based on Sen’s capability approach. The author uses panel survey data with internationally comparable questions on disability for Ethiopia, Malawi, Tanzania and Uganda. It presents evidence on the prevalence of disability and its strong and consistent association with multidimensional poverty, mortality, economic insecurity and deprivations in education, morbidity and employment. It shows that disability needs to be considered from multiple angles including aging, gender, health and poverty. Ultimately, this study makes a call for inclusion and prevention interventions as solutions to the deprivations associated with impairments and health conditions.

 

Chapters include:

  • The Human Development Model of Disability, Health and Wellbeing
  • Measurement, Data and Country Context
  • Prevalence of Functional Difficulties
  • Functional Difficulties and Inequalities Through a Static Lens
  • Dynamics of Functional Difficulties and Wellbeing
  • Main Results and Implications

 

Online collective identities for autism: The perspective of Brazilian parents

ANTUNES, Debora
DHOEST, Alexander
2018

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The importance of online communities for parents of people with disabilities has been discussed by many scholars in the fields of Digital and Disability Studies, showing, for instance, the importance of social support and the formation of social ties. In order to contribute to this scholarship, this paper explores how collective identity models are built and circulated by parents of autistic people in one of the biggest Brazilian online communities about the subject, ‘Sou autista… conheça o meu mundo’ (I am autistic…get to know my world). The results were obtained through a digital ethnography, based on participant observation and an exchange of information with the members of the community studied. Based on the data collected, the study concludes that the collective identity models that circulate in this community can be grouped into legitimising, resistant, and project identities, as postulated by Castells (2010). The different views reflect how parents see autism and represent the ways it is treated in Brazilian society.

 

Disability and the Global South, 2018 Vol.5, No. 1

Challenges in global Indigenous–Disability comparative research, or, why nation-state political histories matter

SOLDATIC, Karen
MELBOE, Line
KERMIT, Patrick
SOMERS, Kelly
2018

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Globally, Indigenous people, also known as First Peoples, have the poorest health outcomes of all population groups, resulting in significantly higher rates of chronic disease, ill-health, and disability. Recent research strongly suggests that Australian First Peoples and the Sami peoples of the Nordic region are positioned at opposite ends of the disability–health spectrum. Australia’s First Peoples, now experience the highest rates of disability in the nation’s recorded history, despite the significant government investment over recent decades in national Indigenous policy. Yet, Nordic Indigenous populations appear to have similar health outcomes and living conditions as the rest of the population in the region. In this paper, we compare some of the global assumptions of the two leading countries of the United Nations Human Development Index– Norway (ranked first) and Australia (ranked second)– and examine the ways in which such rankings act to hide the disparities of life trajectories and outcomes for Indigenous persons living with disability compared to the rest of the population in each country. The findings of the comparative analysis illustrate core areas for consideration when undertaking in-depth comparative research with First Nation’s peoples. This includes issues surrounding the differentiated political significance of national population data systems for local Indigenous peoples in their struggles for recognition, and the nuanced processes of population data categorisation that are developed as a result of First Nation’s localised struggles for recognition, respect and rights under processes of European colonisation.

 

Disability and the Global South, 2018, Vol.5, No. 2

An intersection in population control: welfare reform and indigenous people with a partial capacity to work in the Australian northern territory

St GUILLAUME, Louise
THILL, Cate
2018

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In Australia, in the last decade, there have been significant policy changes to income support payments for people with a disability and Indigenous people. These policy reforms intersect in the experience of Indigenous people with a partial capacity to work in the Northern Territory who are subject to compulsory income management if classified as long-term welfare payment recipients. This intersection is overlooked in existing research and government policy. In this article, we apply intersectionality and Southern disability theory as frameworks to analyse how Indigenous people with a partial capacity to work (PCW) in the Northern Territory are governed under compulsory income management. Whilst the program is theoretically race and ability neutral, in practice it targets specific categories of people because it fails to address the structural and cultural barriers experienced by Indigenous people with a disability and reinscribes disabling and colonising technologies of population control.

 

Disability and the Global South, 2018, Vol.5, No. 2

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