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Inclusive client responsiveness: Focus on people with disabilities and older people

INTERNATIONAL RESCUE COMMITTEE (IRC)
July 2021

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Humanitarian actors recognize the lack of standard practice on the inclusion of older people and people with disabilities in humanitarian response as a current and critical gap in the sector. In recent years, the humanitarian sector has begun to more intentionally address these challenges. In response, the IRC has developed this Inclusive Client Responsiveness Guidance, which aims to address gaps in the IRC’s Client Responsive Programming specifically to strengthen inclusion of people with disabilities and older people. The Guidance consists of three sections to support staff in strengthening inclusion of people with disabilities and older people using the IRC’s Client Responsiveness approach:

Key concepts for designing inclusive feedback mechanisms such as accessibility and reasonable accommodation, to ensure that barriers are addressed, and feedback mechanisms are designed to be accessible to all.

Selection and design of inclusive feedback mechanisms that foster diversity and inclusion.

Monitoring access to feedback mechanisms of people with disabilities and older people through appropriate data collection and analysis.

The guidance also includes a set of resources for practical implementation, which are referenced throughout the document

Disability inclusion annual report 2020

UNITED NATIONS RELIEF AND WORKS AGENCY (UNRWA)
December 2020

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The number of Palestine refugees registered by UNRWA recently grew to 5.7 million (from 5.5 million in 2019) in all its five field of operations in Jordan, Lebanon, Syria, Gaza and the West Bank. Among them are Palestine refugees with disabilities, who have long-term impairments, which in interactions with attitudinal, institutional, and environmental barriers prevent their full and effective participation on an equal basis with others in society. Persons with disabilities constitute an estimated 15 per cent of the global population1, and may constitute a higher percentage in humanitarian contexts, such as Syria, the West Bank and Gaza, in particular, which are UNRWA fields of operations.

 

The main actions undertaken in 2020 discussed in the report are:

  • targeted and disability-specific services for persons with disabilities
  • disability inclusion through programmes
  • inter-agency coordination
  • international protection advocacy

WHO launches assistive technology capacity assessment (ATA-C)

WORLD HEALTH ORGANISATION (WHO)
November 2020

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WHO has developed the assistive technology capacity assessment (ATA-C) tool, a system-level tool to evaluate a country’s capacity to finance, regulate, procure and provide assistive technology. The ATA-C tool enables countries to better understand the current status and identify key actions to improve access to assistive technology: it can be used for awareness raising, policy and programme design and ongoing monitoring and evaluation.

The ATA-C is part of the WHO Assistive Technology Assessment (ATA) Toolkit, helping countries to collect effective and relevant data on assistive technology

Gap Analysis: the inclusion of people with disability and older people in humanitarian response Part 2. Beyond the evidence: Implications for innovation and practice

PRYOR, Wesley
MARELLA, Manjula
ROBINSON, Alex
November 2020

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The first part of the Gap Analysis was published in July 2020, which presented the findings of an academic literature review and grey literature review.

Part 2 of the Gap Analysis presents the insights from individuals working in humanitarian response, disability inclusion and older age inclusion. This report begins by looking at how an agenda for the inclusion of people with disability and older people in humanitarian response has been established. The report then considers the ways in which standards and guidance inform humanitarian practice and the challenges associated with translating commitments into practice. Finally, the report identifies seven areas where there are key gaps and opportunities presenting the potential for innovation in research and practice

If not now, when? Keeping promises to older people affected by humanitarian crises

McGIVERN, Verity
November 2020

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This report looks at the extent to which older people’s rights are being upheld in emergencies and their needs met. The picture it paints is a bleak one. Although some efforts are being made to support older people, overall, the humanitarian system is failing by the standards it has set itself.
 
The report draws on the findings of needs assessments carried out by HelpAge International in the 13 months to the end of 2019. We interviewed 8,883 people aged 50 to 80 - plus affected by natural disasters, conflict or socioeconomic crises in 11 countries in Africa, Asia, Latin America and the Middle East.
 
Since the data was collected, COVID-19 has swept across the globe. The pandemic has both increased the need for humanitarian aid and disrupted its delivery. The response to coronavirus has thrown into stark relief the gulf between the risks older people are facing and the level of support available to them. The findings in this report provide important lessons for improving this response
 

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.

Addressing the disability data gap in humanitarian action

COLLINSON, Sarah
October 2020

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This Humanitarian Practice Network Paper (Number 83) explores the challenge of improving the collection, analysis and use of disability data to support more inclusive, impartial and accountable humanitarian action. It considers both the obstacles in this area and the potential opportunities for improving practice going forward. The paper draws directly on the experience and outcomes of a recent UK Aid-funded multi-partner action research project led by Humanity & Inclusion which explored how the use of the internationally validated Washington Group Questions on Disability can support the collection of more reliable and comparable quantitative data on persons with disabilities in humanitarian settings.

Based on a broader desk review of practice-based reports and case studies, this paper also draws on a further range of methods and approaches that have been taken to collect, analyse and use data and information to support inclusion of people with disabilities across different stages of the humanitarian programming cycle, focusing particularly on instances where qualitative information is used in combination with quantitative data. The paper looks at the collection and use of data on the accessibility and inclusiveness of humanitarian programmes, as well as data on the number, needs and capacities of persons with disabilities

How can innovative partnerships make data stronger and more inclusive?

WELLS, Claudia
SABITI, Bernard
CARANZA TRESOLDI, Javier
October 2020

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Development Initiatives (DI) Director of Data Use Claudia Wells, Senior Strategic Partnerships & Engagement Manager Bernard Sabiti and Founder and Director of the GeoCensos Foundation Javier Carranza Tresoldi explore the power of partnerships to improve data. Looking at the benefits, challenges and nuances of collaboration between all kinds of actors, they share case studies of what works and practical advice to build strong partnerships. 

Inclusion Counts: Disability Data Tracker. A data collection and advocacy guideline for Organisations of Persons with Disabilities (Spotlight on work and employment)

ADAMS, Lisa
October 2020

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This guideline is intended to be a tool for Organisations of Persons with Disabilities (OPDs) and their allies on how to advocate for the rights of persons with disabilities within the global development framework known as the Sustainable Development Goals (SDGs). The guideline is intended to be used as an advocacy tool for OPDs to engage with government, development agencies and other civil society actors on the implementation of the SDGs in line with the UN Convention on the Rights of Persons with Disabilities (CRPD). The thematic focus of this guideline is work and employment. The guideline will explore how the right to work and employment of persons with disabilities can be applied to the SDGs. In particular, this guideline will look at how the rights enshrined in CRPD Article 27 (Work and employment) can be addressed within SDG 8 (Decent Work and Economic Growth). 

CitizEMPOWER: The importance of supporting inclusive citizen-generated data initiatives

LEONARD CHESHIRE
October 2020

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These recommendations provide guidance on how to ensure more inclusive and effective implementation of Citizen Generated Data (CGD) initiatives and partnerships that engage communities effectively, and especially young people, persons with disabilities and civil rights defenders.

 

The recommendations focus on:

Inclusive Partnerships and Effective Collaboration including a "Spotlight from Uganda: Using WG questions in the national census"

Data Access and Disaggregation including a "Spotlight from Madagascar: Youth generated data and accountability"

Resourcing and Funding including a "Spotlight from International Non Government Organisations: Using Washington Group Questions (WGQ) in humanitarian and development settings"

Making research disability-inclusive – reflections from Nigeria

MOHAMMED, Anu
September 2020

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Improvements made to inclusivity of disability research in Nigeria following participation in Inclusive Futures and training in the use of the Washington Group Short Questions are described. Applications of these lessons to recent research on COVID-19 in Nigeria is reported.

Global Leprosy Update 2019

WORLD HEALTH ORGANISATION (WHO)
September 2020

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A yearly update providing data from 160 countries around the world on the state of leprosy. The data will be useful to policy-makers, planners and researchers. 

The main leprosy indicators are now all based on a denominator of 1 million population. The key indicators are the case detection rate, the disability rate and the case detection rate in children.

The sub-title, “Time to step-up prevention initiatives” is the main focus of the Editorial comment on the last 3 pages, emphasizing the Triple Zero targets

 

Weekly Epidemiological Record  4 SEPTEMBER 2020, 95th YEAR No 36, 2020, 95, 417–440

 

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.

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.

Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use

THOMPSON, Stephen
CANNON, Mariah
WICKENDEN, Mary
2020

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This research brief details the main ethical challenges and corresponding mitigation strategies identified in the literature with regard to the ethical involvement of children with disabilities in evidence generation activities. Evidence generation activities are defined as per the UNICEF Procedure for Ethical Standards in Research, Evaluation, Data Collection and Analysis (2015), as research, evaluation, data collection and analysis. The United Nations Convention on the Rights of the Child (art. 12) states that children have the right to form and express views freely in all matters affecting them and that the views of the child must be given due weight in accordance with her/his age and maturity.

 

The United Nations Convention on the Rights of Persons with Disabilities (art. 7) states that children with disabilities must enjoy human rights and freedoms on an equal basis with other children, and that they have a right to express their views freely and should be provided with assistance where necessary to realize that right. The two conventions in general, and these two articles specifically, frame this research brief, which aims to encourage practitioners to explicitly consider ethical ways to involve children with disabilities in evidence generation.

 

The findings detailed in this summary brief are based on a rapid review of 57 relevant papers identified through an online search using a systematic approach and consultation with experts. There was a paucity of evidence focusing specifically on the ethical challenges of involving children with disabilities in evidence generation activities. The evidence that did exist in this area was found to focus disproportionately on high-income countries, with low- and middle-income countries markedly under-represented.

Labour Force Survey (LFS) resources. The global reference for labour force survey design

INTERNATIONAL LABOUR ORGANISATION (ILO)
July 2020

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National labour force surveys (LFS) are the main source behind essential headline indicators of the labour market and the world of work. A wide range of economic and social policies, from monetary and fiscal policies to employment, decent work, vocational education and training, and a wide range of poverty reduction and social inclusion policies depend on labour force surveys as their main source of statistics for informed decision-making and monitoring.

To support countries in developing their national LFS, the ILO Department of Statistics maintains a set of model LFS resources to support PAPI and CAPI data collection. The ILO model LFS resources consolidate existing good survey practice and new approaches following evidence from ILO’s LFS testing programme to support the collection of work and labour market data, aligned with the latest international standards.

 

An add-on module has been introduced (July 2020) "Functional difficulties and barriers to employment" concerned with different barriers to labour market integration of persons with disabiliities.

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.

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

 

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