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Covid-19 Double Jeopardy for Persons with Disability

ADD International
August 2020

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SUMMARY

This report presents the findings from telephone interviews with 91 representatives from 15 Disabled People’s Organisation (DPO) partners in Bangladesh, to ask about the impact of the Covid-19 pandemic on persons with disabilities in Bangladesh.

The report finds that, in the Covid-19 pandemic, some persons with disabilities experience double jeopardy—not only are persons with disabilities disproportionately impacted by the pandemic, but they are also disproportionately excluded from protection and survival support.

Persons with disabilities report being disproportionately excluded from Covid-19 support. 63% of respondents report not receiving the same protection and survival support as others. Two-thirds of those who described their personal experiences reported supply shortage or diversion of essential food and medical supplies as reasons for why they had been excluded.

Relief that has been provided has not met need. Many respondents (84%) report that survival support does not meet their basic needs. Support received has mostly been food instead of cash. Some (17%) report difficulty in following Covid-19 advice, mostly because they cannot afford protection materials.

Persons with multiple disabilities are being left further behind. Respondents with multiple functional difficulties experience more exclusion than respondents with one functional difficulty. This finding of disproportionate exclusion is statistically significant and consistent with qualitative responses, which show that most of those that did report challenges in following received advice were persons with multiple functional difficulties. This strongly suggests that persons with multiple functional difficulties experience more barriers. Persons with multiple functional difficulties who were excluded tended to report difficulties in communicating, remembering, self-care and walking.

The economic impact of the pandemic is acute for persons with disabilities. On average, respondents report losing 65% of their income since the Covid-19 crisis began, which in absolute terms, after adjusting for purchase power parity, is the equivalent of moving from £167 to £58 in monthly earnings.

Some respondents report that they are skipping meals and going hungry. Anecdotal reports reveal that families are reverting to one main meal every two days, or two main meals every three days. Many are borrowing and relying on family support to meet their daily needs to survive, and some of those who already depended on family support have had that support reduced or withdrawn. On balance, future plans reflect a sense of precarity due to uncertainty, ranging from feelings of hope with specific plans to powerlessness with no plans.

Government can do more. Many respondents said government should prioritise persons with disabilities and provide more relief. Many voiced concerns about how relief was being distributed or stolen, and that it is not reaching those most in need. The majority of respondents said that NGOs and wealthy people should play a role in support efforts.

Measuring treatment outcome in children with developmental coordination disorder; responsiveness of six outcome measures

HEUS, Inge
WEEZENBERG, Daphne
SEVERIJEN, Sebastiaam
VLIELAND, Thea Vliet
VAN DER HOLST, Menno
July 2020

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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.

COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State

LANDES, Scott D.
TURK, Margaret A.
FORMICA, Margaret K.
McDONALD, Katherine E.
STEVENS, J. Dalton
June 2020

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In order to investigate whether people with intellectual and developmental disabilities (IDD) are at higher risk of severe outcomes from COVID-19, the COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State were compared. Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living inresidential group homes and New York State through May 28, 2020

 

Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2020.100969

 

Validation of the International Classification of Functioning, Disability and Health (ICF) core set for Diabetes Mellitus from nurses’ perspective using the Delphi method

WILDEBOER, Anita T
STALLINGA, Hillegonda A
ROODBOL, Petrie F
May 2020

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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.

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

BANKS, Lena
et al
April 2019

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

 

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

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

Adding meaning to physical fitness test results in individuals with intellectual disabilities

OPPEWAL, Alyt
HILGENKAMP, Thessa I M
February 2019

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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.

The Arabic version of Trinity Amputation and Prosthetic Experience Scale - Revised (TAPES-R) for lower limb amputees: Reliability and validity

MASSARWEH, Reem
SOBUH, Mohammad
2019

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Purpose: Despite the importance of the evaluation process in lower limb prosthetic rehabilitation, prostheses are rarely evaluated properly in the Arab world. This is partly due to the absence of any suitable Arabic evaluative tool. The aim of this study is to translate TAPES-R (a standardised evaluative questionnaire) into Arabic and to investigate its psychometric properties on lower limb amputees. Such a tool would ultimately be of benefit for clinical follow-up and research purposes.

 

Method: International standards were followed for the forward- and back-translation of the TAPES-R questionnaire. A sample of 111 Arabic-speaking volunteers with lower limb amputation completed the translated version of the questionnaire. The responses were then statistically analysed using factor analysis and Cronbach’s α to assess the content and construct validity, and internal consistency (reliability) respectively.

 

Results: Factor analysis showed that the questionnaire’s items (included in the analysis) can be divided into three distinct dimensions as was originally suggested. The distribution of the items within the three dimensions is comparable with the original questionnaire. All three parts of TAPES-R showed high reliability; where Cronbach’s α were .892, .894, and .873 respectively.

 

Conclusion: This study found that the Arabic version of TAPES-R represents a valid and reliable tool.

 

Limitations: The questionnaire is designed to be emailed or posted, but the majority of the amputee population in Jordan did not have these services, so direct contact with each participant was necessary.

 

 

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

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.

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.

Severe-to-profound hearing impairment: demographic data, gender differences and benefits of audiological rehabilitation

TURUNEN-TAHERI, Satu
CARLSSON, Per-Inge
JOHNSON, Ann-Christin
HELLSTROM, Sten
June 2018

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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?

SPREAT, Scott
2017

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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.

Washington Group presentation

LOEB, Mitchell
2015

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A brief history of the Washington Group on Disability Statistics and their development of standard questions for the collection of statistics on disability worldwide is presented. A short set of 6 questions was originally developed and an extended set of 30-35 was finalised in 2009. Two modules have been developed in partnership with UNICEF for children: one for 2-4 year olds and one for 5-17 year olds.  A module concerned with inclusive education has also been developed

Washington Group approach

LOEB, Mitchell
2015

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The general approach to the collection of statistics on disability by the Washington Group on Disability Statistics is outlined. The group uses the social model of disability, looking at what in the environment makes it difficult to participate. They use neutral language, asking about difficulties rather than disabilities and consider there to be a spectrum of disabilities (mild-severe)  

Short set of questions on disability: presentation

LOEB, Mitchell
2015

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An introduction to the set of 6 questions devised by the Washington Group on Disability Statistics to collect statistics on disability is given. The short set of questions was designed primarily for a census. It has one question for each of 6 domains of functioning: vision, hearing, mobility, communication, self care and cognition. There are 4 categories (no difficulty-cannot do). The questions were validated by testing in various countries. 

Short set of questions on disability: data collection

LOEB, Mitchell
2015

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Recommendations for data collection of the short set of 6 questions devised by the Washington Group for Disability Statistics are given. The questions are phrased to ask whether the subject has difficulty with any of the domains of functioning. They have been field validated. It is recommended that the questions are presented without initial screening questions, that the enumerators are well trained and that the translations from the original English are appropriate. Four domains are highlighted from the 6 if required by space or time. 

Washington Group tools: methodology issues

LOEB, Mitchell
2015

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The process of devising the short set of six questions by the Washington Group on Disability Statistics and recommendations for their use are discussed. The questions were cognitively tested to determine patterns of interpretation and out of scope patterns. Translations were made to give feasible language to get to the same concepts. Cognitive testing was then repeated to examine cross national comparability. Field testing of 1000 people followed. The importance of enumerator training and of using the exact questions and response categories is emphasised. 

Sightsavers disability disaggregation project : India mid-term review report

JOLLEY, Emma
THIVILLIER, Pauline
September 2015

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‘This Mid Term Review (MTR) report contains information on the first six months (July – March) of the disability disaggregation pilot project taking place in Bhopal, India. The report includes information on the processes in place at the different locations to collect data disaggregated by disability and initial results. It also captures attitude, knowledge and experiences of programme managers, decision makers and data collectors around disability, their challenges, and the experiences of Sightsavers’ implementing staff’

Disability disaggregation of data : baseline report

JOLLEY, Emma
THIVILLIER, Pauline
SMITH, Fred
December 2014

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“This baseline report contains information on the initial steps (prior to the start of data collection) undertaken to include disaggregation of data by disability in two projects in Tanzania and India. The report includes information on project selection, development of an Monitoring and Evaluation (M&E) plan, adaptation of data collection tools and training of Country Office staff, partners and data collectors. This baseline also captures the knowledge, attitudes and practices of programme managers, decision makers and data collectors around disability, the availability of data, and the experiences of Sightsavers’ implementing staff”

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Childhood disability and malnutrition in Turkana Kenya : a summary report for stakeholders and policy

KISIA, James
et al
2014

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This study aimed to assess whether children with disabilities were included within humanitarian and food security response programmes and whether there was an association between disability and malnutrition. The fieldwork was conducted in 2013 in the Turkana region of Kenya, a region repeatedly classified as experiencing a humanitarian emergency, and used both qualitative and quantitative methods. The key finding of the report is that children with disabilities are more likely to be malnourished and the key recommendations are that children with disabilities should be targeted in food aid and food assistance programmes, and that further efforts are needed to include children with disabilities in education.   The report is intended for stakeholders to inform policy

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