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How can we measure disability in research related to the COVID-19 response?
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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
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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
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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.
Measuring treatment outcome in children with developmental coordination disorder; responsiveness of six outcome measures
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Purpose: Although measuring outcome of rehabilitation in children with Developmental Coordination Disorder is considered important no consensus exists on which instruments to use. An important attribute of a measurement instrument would be that it is sensitive to clinical changes. The aim of this prospective, observational study was therefore to investigate the responsiveness of six potentially suitable instruments.
Methods: Forty-one children (34 boys, median age 7.8 years, Inter Quartile Range: 7.2–9.2) receiving multidisciplinary rehabilitation treatment for Developmental Coordination Disorder were included (mean treatment time: 32.8 h, Standard Deviation 7.3). The following instruments were applied before and after rehabilitation: Movement-Assessment-Battery-Children-2 (MABC-2), Canadian Occupational Performance Measure (COPM), Systematic detection writing problems (SOS-2-NL), DCD-daily, Behaviour Rating Inventory of Executive Function (BRIEF), and TNO-AZL children’s Quality of Life questionnaire (TACQOL)). Change-scores (paired t-test/Wilcoxon-test) and responsiveness (Effect-sizes and Standardized-Response-Means) were calculated.
Results: Significant differences over time were found for the Canadian Occupational Performance Measure, DCDdaily and Movement-Asessment-Battery-Children-2 (p < 0.05). The responsiveness of these instruments was moderate-high (Canadian Occupational Performance Measure-performance Effect-Size:1.70/Standardized-Response-Mean:1.81, Canadian Occupational Performance Measure-satisfaction Effect-Size:1.65/Standardized-Response-Mean 1.53; DCDdaily-total-score Effect-Size:0.40/Standardized-Response-Mean:0.62, DCDdaily-Quality-score Effect-Size:0.74/Standardized-Response-Mean:0.89, DCDdaily-time-score Effect-Size:0.21/Standardized-Response-Mean:0.43; MABC-2-total-score Effect-Size:0.42/Standardized-Response-Mean:0.43, MABC-2-Ball-skills-score Effect-Size:0.33/Standardized-Response-Mean:0.36). Systematic detection of writing problems (SOS-2-NL), Behaviour Rating Inventory of Executive Function (BRIEF) and TNO-AZL children’s Quality of Life questionnaire (TACQOL) were not responsive to change.
Conclusion: Although the Movement-Assessment-Battery-Children-2 test is the most widely used instrument when measuring rehabilitation outcome in Developmental Coordination Disorder, the Canadian Occupational Performance Measure and DCDdaily seem to be more responsive and constitute a valuable addition.
Ear and hearing survey handbook
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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.
Validation of the International Classification of Functioning, Disability and Health (ICF) core set for Diabetes Mellitus from nurses’ perspective using the Delphi method
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Purpose: To explore content validity of the ICF core set for Diabetes Mellitus from nurses’ perspective.
Materials and methods: A two-round Delphi study was conducted with nurses specialized in diabetes care, who were recruited by purposive sampling. Level of agreement on relevance of ICF categories was calculated using Item-level Content Validity Index.
Results: Twenty-seven nurses judged 147 second-level ICF categories on relevance for people with Diabetes Mellitus. Agreement was reached on 65 (44.2%) categories, of which 46 were from the ICF core set for Diabetes Mellitus, 17 were from previous validation studies, and two were additional categories that were mentioned as relevant. Forty-six out of the 65categories were derived from the component body functions and structures. No agreement was reached on 82 (55.8%) categories, of which 33 were derived from the component environmental factors.
Conclusions: Content validity of the ICF core set for Diabetes Mellitus was partially supported by specialized nurses. Agreement was predominantly reached on biomedical categories. Content validity of categories derived from environmental factors received little support.
Relevance: The nursing profession should be aware of a gap between the current biomedical focus and the desired biopsychosocial approach; the latter of which is recommended in chronic care.
COVID-19 Disability Rights Monitor
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Evidence is emerging that persons with disabilities are being disproportionately affected by the Coronavirus pandemic and emergency measures being taken by governments worldwide. As governments rush to respond to the virus, it is more critical than ever to guarantee that measures taken are fully inclusive of persons with disabilities and prevent human rights violations from taking place.
With the endorsements of the United Nations Special Rapporteur on the Right to Health, Mr Dainius Pūras, and the UN Special Rapporteur on the Rights of Persons with Disabilities, Ms Catalina Devandas Aguilar, a coalition of six disability rights organisations is today launching a major international monitoring initiative entitled “COVID-19 Disability Rights Monitor” to conduct rapid independent monitoring of state measures concerning persons with disabilities. The first element of this global initiative is the launch of two surveys requesting official information from governments and requesting the testimonies of persons with disabilities and their representative organisations. The surveys aim to collect information about what states are doing to protect core rights of persons with disabilities including the rights to life, access to health and essential services.
How well is aid targeting disability?
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A blog explaining and categorising how international aid has been allocated to projects in a primary or a secondary disability component. It further classifies disability-relevant projects according to their particular focus on one or more of two areas:
Inclusion and empowerment projects have a focus on ensuring people with disabilities are included in benefits on an equal basis to people without disabilities.
Economic empowerment projects are a subset of inclusion and empowerment projects that have the deliberate purpose of improving employment opportunities and rights for people with disabilities.
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.
Growing up with a disability following paralytic poliomyelitis: experiences from persons with late effects of polio
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Purpose: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation.
Methods: Seven women and seven men (mean age 70 years, min–max 61–78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation.
Results: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one’s ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not.
Conclusion: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.
Making visible the invisible: Why disability-disaggregated data is vital to “Leave No-One Behind”
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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
Three Circles Tool - organisational capacity assessment & planning tool
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This tool has been developed by ADD International for use with partner DPOs, based on existing good practice in the development sector. It was developed with input from MEL staff across the organisation in July 2016, based on ADD’s long experience of organisational capacity building practice with DPOs , and was then piloted with DPOs before being finalised. It replaces the Five Core Capabilities tool which we have previously adapted for use within ADD International’s programmes. The key elements of the Five Core Capabilities tool have here been incorporated into a simpler model with three main categories – the three circles – and includes a system for identifying progress against specific plans within each capacity area by exploring a total of 23 different aspects of capacity within these three broad areas. The three circles tool supports organisational capacity building in the following ways:
- To support discussion and learning within partner DPOs on the key aspects of organisational capacity,
- To analyse gaps and weaknesses in organisational capacity, and to identify and prioritise practical action needed to address these,
- To identify specific organisational capacity building support needed from ADD/other sources to address the issues raised,
- To track progress on strengthening organisational capacity over time.
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.
The use of information and communication technology in healthcare to improve participation in everyday life: a scoping review
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Background and purpose: The increase in use of everyday information and communication technologies can lead to the need for health professionals to incorporate technology use competencies in practice. Information and communication technologies has the potential to improve participation in daily life among people with disability. The aim was to review and describe evidence of the use of information and communication technology, including mobile technology, for improving participation in everyday life. A secondary aim was to describe how study outcomes were related to participation.
Materials and methods: A scoping review methodology was used to identify studies through databases as MEDLINE, CINAHL, Cochrane Library. Thereafter, the studies were screened and assessed for inclusion.
Results: Eleven studies were included. The most commonly used technology were videoconferencing and the telephone. Ten of the 11 studies reported a change in participation in everyday life. Participation was mainly described as involvement in a life situation or related to activities of daily living.
Conclusion: Delivering an intervention to improve participation through information and communication technology can be a valid option in rehabilitation. There is a need to measure and describe the intervention and its outcomes in relation to a definition of participation in future studies.
Adding meaning to physical fitness test results in individuals with intellectual disabilities
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Purpose: Evaluating physical fitness in individuals with intellectual disabilities (ID) is challenging, and a multitude of different versions of tests exist. However, psychometric properties of these tests are mostly unknown, and both researchers as clinical practitioners struggle with selecting appropriate tests for individuals with ID. We aim to present a selection of field tests with satisfactory feasibility, reliability, and validity, and of which reference data are available.
Methods: Tests were selected based on (1) literature review on psychometric properties, (2) expert meetings with physiotherapists and movement experts, (3) studies on population specific psychometric properties, and (3) availability of reference data. Tests were selected if they had demonstrated sufficient feasibility, reliability, validity, and possibilities for interpretation of results.
Results: We present a basic set of physical fitness tests, the ID-fitscan, to be used in (older) adults with mild to moderate ID and some walking ability. The ID-fitscan includes tests for body composition (BMI, waist circumference), muscular strength (grip strength), muscular endurance (30 second and five times chair stand), and balance (static balance stances, comfortable gait speed).
Conclusions: The ID-fitscan can be used by researchers, physiotherapists, and other clinical practitioners to evaluate physical fitness in adults with ID. Recommendations for future research include expansion of research into psychometric properties of more fitness tests and combining physical fitness data on this population in larger datasets.
Effect of Abacus Training on Numerical Ability of Students with Hearing Loss
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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.
Severe-to-profound hearing impairment: demographic data, gender differences and benefits of audiological rehabilitation
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Purpose: The purpose of this study was to identify and report demographic data of patients with severe-to-profound hearing loss, assess participation in audiological rehabilitation and analyze the benefits of various rehabilitation methods.
Materials and methods: Data on 4286 patients with severe-to-profound hearing impairments registered in the Swedish Quality Register of Otorhinolaryngology over a period from 2006–2015 were studied. Demographic data, gender differences, audiological rehabilitation and benefits of the rehabilitation were analyzed.
Results: Group rehabilitation and visits to a hearing rehabilitation educator provided the most benefits in audiological rehabilitation. Only 40.5% of the patients received extended audiological rehabilitation, of which 54.5% were women. A total of 9.5% of patients participated in group rehabilitation, with 59.5% being women. Women also visited technicians, welfare officers, hearing rehabilitation educators, psychologists and physicians and received communication rehabilitation in a group and fit with cochlea implants significantly more often than did men.
Conclusions: The study emphasizes the importance of being given the opportunity to participate in group rehabilitation and meet a hearing rehabilitation educator to experience the benefits of hearing rehabilitation. There is a need to offer extended audiological rehabilitation, especially in terms of gender differences, to provide the same impact for women and men.
Is Adaptive Behaviour too Normal to be Normally Distributed?
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Purpose: This study attempts to ascertain if adaptive behaviour complies with the characteristics of a normal distribution.
Methods: Adaptive behaviour data collected from two large state samples of 2900 were reviewed to determine the shape of their distributions. A smaller convenience sample of 37 adults without intellectual disability was similarly reviewed.
Results: Findings suggest that the shape of the distribution of adaptive behaviour increasingly deviates from normal as cognitive abilities increase.
Conclusions/Implications: It does not appear that adaptive behaviour is normally distributed. This will impact the diagnosis of intellectual disability because while IQ scores two standard deviations below the mean reliably cut off about 2% of the population, a similar cut-off cannot be assumed for adaptive behaviour.
Identifying Rehabilitation Workforce Strengths, Concerns and Needs: A Case Study from the Pacific Islands
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Purpose: This exploratory case study was undertaken to inform capacity development of the rehabilitation workforce in member nations of the Pacific Islands Forum (PIF).
Method: Participants at the 1st Pacific CBR Forum in June 2012 were key informants for this study. They comprised the disability focal points from government departments in each of the 14 countries, representatives of DPOs and disability service providers. The study was conducted in 3 phases: a template to gather data on rehabilitation workers; key informant interviews; and, stakeholder workshops to identify strengths and needs of the rehabilitation workforce in the Pacific.
Results: The detailed case study findings suggest two critical drivers for rehabilitation health workforce development in the Pacific context. The first is leadership and commitment from government to serve rehabilitation needs in the community. The second is the urgent need to find alternative ways to service the demand for rehabilitation services as it is highly unlikely that the supply of specialist personnel will be adequate.
Conclusions: A multi-sectoral view of health and social service systems is a key element for the development of a rehabilitation health workforce. The endorsement of the WHO Global Disability Action Plan by the World Health Assembly in 2014 further enhances the opportunity to work collaboratively across sectors in Pacific countries. Specialist personnel are and will remain in short supply. There is opportunity for the region to lead the development of alternate workforce mechanisms through the training and supply of skilled community-based rehabilitation personnel.
Work Ability Index: Validation and Model Comparison of the Malaysian Work Ability Index (WAI)
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Purpose: The study aimed to (1) measure the Work Ability of employees with disability; (2) assess the factor structure of different potential models of Work Ability Index (WAI) for employees with disability; and (3) identify the best factor structure of Work Ability Index for employees with disability in the Malaysian cultural context.
Methods: Data was collected using the Work Ability Index (WAI) translated into Malay language. The study sample consisted of 275 employees with physical disability, from both public and private sectors across Malaysia. Descriptive statistics were calculated using IBM SPSS 20 to evaluate the score of each subscale and the cumulative index of Work Ability among employees with disability. Confirmatory factor analysis (CFA) was conducted using IBM SPSS AMOS 21 to assess the factor structure of WAI and evaluate the validity of the proposed models for employees with disability.
Results: The WAI scores were 29.5% poor, 35.3% moderate, 28.7% good and 6.5% excellent. In the validation process, a non-orthogonal two dimensional structure was identified. In this model of WAI, the subscales were attributed to two factors: (1) subjective Work Ability factor that consisted of subscales 1, 2 and 7; and (2) health-related Work Ability factor, comprised of subscales 3, 5, 4 and 6. These two factors were positively correlated, which indicates that employees with disability who exhibit positive subjective Work Ability tend to also report positive health- related Work Ability.
Conclusion: This study has provided the first Malay version of WAI and has paved the way for future studies on work ability among employees with disability. The WAI translation has been validated among employees with disability and has shown adequate psychometric properties, thus making it suitable to investigate the associations between aspects of work and their impact on the health of employees with disability.
Doing the wild thing : supporting an ordinary sexual life for people with intellectual disabilities
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For many people who are called disabled, having this label means to be excluded from the experience of 'an ordinary sexual life'. For those who are called intellectually disabled exclusion from experiences of any kind of positive sexual life is almost universal. This article explores how some people with intellectual disabilities have sought to open up pathways towards accessing experiences of sexual expression as a way to move forward towards being able to integrate a concept of sexuality into their lives. Two support workers are interviewed. Both are employed by a Human Services organization in Aotearoa, New Zealand, which provides long term support for people with intellectual disabilities. Their comments reveal that access to successful instances of sexual expression for people in this group are currently only available those who are articulate enough and persistent enough to keep trying until they succeed. Barriers to success are isolated and some wider issues surrounding what changes might positively affect this group are discussed.
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