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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.

Uganda's disability data landscape and the economic inclusion of persons with disabilities

Development Initiatives
November 2021

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This report looks at the landscape of data on disability in Uganda – summarising what data on persons with disabilities is available, who produces and uses it, and how – as well as what this means for the economic inclusion of persons with disabilities.

 

For persons with disabilities to benefit from and contribute to society and the economy there needs to be effective policies, programmes and services that support their inclusion, particularly in employment. Reliable information and data on persons with disabilities, known as ‘disability data’, is essential to planning and for decision-making. When it is of high quality, accessible and used effectively, disability data can help organisations of persons with disabilities (OPDs), civil society, government and businesses better understand and prioritise interventions that are vital for supporting persons with disabilities and ensuring their inclusion.

 

OPDs, civil society and the government have an important role to play in strengthening the landscape of disability data. Developed as part of Development Initiatives’ work on data to support disability inclusion, in consultation with Uganda’s disability rights movement, this report presents an analysis of Uganda’s landscape of disability data. It highlights important data sources, challenges and recommendations, providing a valuable evidence base to inform efforts aimed at strengthening the enabling environment for disability inclusion.

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

MACTAGGART, Islay
KUPER, Hannah
August 2020

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There is growing evidence that COVID-19 is disproportionally impacting the lives of people with disabilities. This includes evidence of the increased risk of severe outcomes of contracting COVID-19 amongst people with existing health conditions, including many people with disabilities. It also includes a wide range of other potential impacts such as: reductions or disruptions in non-COVID-19 health or rehabilitation services, the effects of shielding on isolation and mental health, the implications of social distancing on people who require carer support, and the impact on poverty, participation and wellbeing due to disrupted disability-inclusive development programmes.

 

Measurement of disability in research has historically been contested and a number of different tools exist. Clear guidance is needed on how to determine which tool to use to understand the situation of people with disabilities in different settings, and plan responsive and inclusive COVID-19 programmes and policies to support their needs. Good quality, comparable data on disability is essential for tracking the impact of the COVID-19 pandemic, as well as prevention and mitigation interventions, amongst people with disabilities. Such evidence is also imperative for tracking progress towards the Sustainable Development Goals, and UNCRPD compliance.

 

This evidence brief synthesises findings from a scoping review of ICF-compatible tools to measure disability in population-based surveys with a focus on LMICs (2018), protocols and research outputs from seven population-based surveys of disability across Asia, Africa and the Pacific, secondary analyses of the South African Census, US National Health Interview Survey and three Demographic and Health Surveys, reflections from global stakeholders in disability measurement (including the UN Flagship Report on Disability), and evidence compiled for the upcoming Global Disability Research Massive Open Online Course at the London School of Hygiene & Tropical Medicine

Status of disability in Kenya: Statistics from the 2019 census

Development Initiatives
August 2020

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

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

ALKIRE, Sabina
et al
July 2020

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

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

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

 

The data is not disaggregated by people with disabilities.

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 

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.

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.

Making visible the invisible: Why disability-disaggregated data is vital to “Leave No-One Behind”

ABUALGHAIB, Ola
GROCE, Nora
SIMEU, Natalie
CAREW, Mark T
MONT, Daniel
May 2019

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It is commonly assumed that there is a lack of disability data, and development actors tend to attribute lack of data as the reason for failing to proactively plan for the inclusion of people with disabilities within their programming. However, it is an incorrect assumption that there is a lack of disability data. There is now a growing amount of disability data available. Disability, however, is a notoriously complex phenomenon, with definitions of disability varying across contexts, as well as variations in methodologies that are employed to measure it. Therefore, the body of disability data that does exist is not comprehensive, is often of low quality, and is lacking in comparability. The need for comprehensive, high quality disability data is an urgent priority bringing together a number of disability actors, with a concerted response underway. We argue here that enough data does exist and can be easily disaggregated as demonstrated by Leonard Cheshire’s Disability Data Portal and other studies using the Washington Group Question Sets developed by the Washington Group on Disability Statistics. Disaggregated data can improve planning and budgeting for reasonable accommodation to realise the human rights of people with disabilities

 

Sustainability 2019, 11(11), 3091

https://doi.org/10.3390/su11113091

Physical-activity support for people with intellectual disabilities: a theory-informed qualitative study exploring the direct support professionals’ perspective

BOSSINK, Leontien W M
VAN DER PUTTEN, Annette A J
VLASKAMP, Carla
April 2019

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Purpose: The study aims to explore factors that influence (facilitate or impede) direct support professionals supporting people with intellectual disabilities in engaging in physical activity. Influencing factors will be synthesized into a conceptual model to set the stage for developing future interventions and policies to change direct support professional behavior.

 

Method: Based on the Theoretical Domains Framework, semi-structured interviews were conducted with 25 direct support professionals of people with mild to profound intellectual disabilities. Influencing factors were analyzed using both inductive and deductive coding strategies. The theoretical sources of behavior (i.e., capability, opportunity, and motivation) were leading components in the development of a conceptual model.

 

Results: Five influential factors facilitating or impeding physical-activity support were isolated that related to direct support professionals’ capability, eight to the opportunities afforded them, and 11 to their motivation. Another six inductively emerged, which related to the characteristics of people with intellectual disabilities and which then influenced the capability, opportunity, or motivation to engage in physical-activity support by direct support professionals.

 

Conclusions: Although experiences differed, the conceptual model developed here provides theoretically based targets for a comprehensive approach to changing direct support professional behavior and thus promoting the support of physical activity in people with intellectual disabilities.

Public stigmatisation of people with intellectual disabilities: a mixed-method population survey into stereotypes and their relationship with familiarity and discrimination

PELLEBOER-GUNNINK, Hannah A
VAN WEEGHEL, Jaap
EMBREGTS, Petri J C M
January 2019

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Purpose: Stigmatisation can negatively affect opportunities for people with intellectual disabilities to participate in society. Stereotyping, a first step in the process of stigmatisation, has been insufficiently explored for people with intellectual disabilities. This study examined the general public’s set of stereotypes that is saliently attributed to people with intellectual disabilities as well as the relationship of these stereotypes with discriminatory intentions and familiarity.

 

Materials and methods: A mixed-method cross-sectional survey within a representative sample of the Dutch population (n = 892) was used. Stereotypes were analysed with factor analysis of a trait-rating scale, and qualitative analysis of an open-ended question. The relationship between stereotypes and discrimination as well as familiarity with people with intellectual disabilities was explored through multivariate analyses.

 

Results and conclusions: Four stereotype-factors appeared: “friendly”, “in need of help”, “unintelligent”, and “nuisance”. Stereotypes in the “nuisance” factor seemed unimportant due to their infrequent report in the open-ended question. “Friendly”, “in need of help”, “unintelligent” were found to be salient stereotypes of people with intellectual disabilities due to their frequent report. The stereotypes did not relate to high levels of explicit discrimination. Yet due to the both positive and negative valence of the stereotypes, subtle forms of discrimination may be expected such as limited opportunities for choice and self-determination. This may affect opportunities for rehabilitation and might be challenged by protest-components within anti-stigma efforts.

Time to update the ICF by including socioemotional qualities of participation? The development of a “patient ladder of participation” based on interview data of people with early rheumatoid arthritis (the Swedish TIRA study)

SVERKER, Annette
THYBERG, Ingrid
VALTERSSON, Eva
BJORK, Mathilda
HJALMARSSON, Sara
OSTLUND, Gunnel
January 2019

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Purpose: The aim of was to identify and illustrate in what situations and with what qualities people with early RA experience participation in every day’s life.

 

Methods: Fifty-nine patients (age 18–63 years) were interviewed; 25 men and 34 women. Content analysis was used to identify meaning units that were sorted based on the type of situations described and later on, categories based on quality aspects of participation were developed.

 

Results: Participation was described as: 1. being part of a group, where a sense of belonging arose. 2. In doing activities with others for example at work or in leisure. 3. When sharing everyday chores and responsibilities for example in domestic duties. 4. When experiencing influence on actions such as when being asked for opinions on how to conduct a specific task. 5. When having the possibility to give direction of goals in rehabilitation, or elsewhere. 6. When sharing decision making and experiencing a high degree of influence in the situation.

 

Conclusions: Participation from an individual’s perspective is about belonging and having influence that mediates a positive feeling of being included and that you matter as a person. The results are important when using participation as a goal in clinical care. It is important to expand participation beyond the definitions in ICF and guidelines to include the patients’ socio-emotional participation in order to promote health.

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.

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