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Inclusive information systems for social protection: Intentionally integrating gender and disability

BARCA, Valentina
HEBBAR, Madhumitha
COTE, Alexandre
SCHOEMAKER, Emrys
ENFIELD, Susan
HOLMES, Rebecca
WYLDE, Emily
March 2021

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Digital information systems serving the social protection sector, and especially social assistance, are increasingly prominent and will continue to be, as is the case within all other sectors. “Why? Because the ability of a country to care for its people and respond to their lifecycle needs depends on its ability to identify those who are in need, enroll them, provide tailored benefits and services, and follow up to cater to evolving circumstances”. Governments also need to be able to monitor programme implementation and impact, feeding into longer-term decisions on design and resource allocation. “All of these actions require accessible, dynamic and real-time data and information exchange if the goal of universal coverage is to be achieved” (Chirchir and Barca, 2019).

The coverage (% of the population included in the information system), relevance (amount/type of data they store), and accessibility (e.g. level of interoperability/data sharing across the government data ecosystem) of these administrative data systems has also been increasing in many countries – posing important opportunities and challenges to policy-makers. The question is how to develop these systems in a way that is inclusive and right-based, leveraging technology “to ensure a higher standard of living for the vulnerable and disadvantaged” (Alston, 2019) rather than becoming a further barrier to inclusion. To illustrate the point this paper specifically focuses on gender and disability inclusion, while acknowledging similar considerations apply to all other forms of (intersectional) exclusion.

COVID 19 in Nepal: The Impact on Indigenous Peoples and Persons with Disabilities

GURUNG, Pratima
2021

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The COVID 19 pandemic crisis is unfolding against the backdrop of several important milestones for equality and the human rights of various marginalized groups including women and girls, indigenous peoples and persons with disabilities in all their diversities and intersections in Nepal. The COVID-19 pandemic has entrenched systemic gaps, underlying structural inequalities and pervasive discrimination, more visible with inadequate healthcare, access to information, employment and livelihoods, and social protection system mainly for marginalized groups. This study aims to understand the challenges and impacts of the COVID 19 on marginalized groups including persons with disabilities in Nepal. Based on qualitative research with primary and secondary information, the paper emphasizes the experiences and realities of marginalized groups during the lockdown and pandemic situations. Some of the existing challenges faced by marginalized groups include access to information and health measures related to COVID 19, access to livelihoods and employment, increasing rates of suicide, violence against women from marginalized groups, women with disabilities, and others. The study will integrate these components and deal with intersections with concrete recommendations. 

Validation of the international classification of functioning, disability and health (ICF) core sets from 2001 to 2019 – a scoping review

KARLSSON, Elin
GUSTAFSSON, Johanna
February 2021

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Objective: To investigate and summarize the literature on the validation of International classification of functioning, disability and health (ICF) core sets from 2001 to 2019 and explore what research methods have been used when validating ICF core sets.

 

Methods: The current study is a scoping review using a structured literature search.

 

Results: In total, 66 scientific articles were included, of which 23 ICF core sets were validated. Most validation studies were conducted in Europe using a quantitative methodology and were validated from the perspective of patients. Analysis methods differed considerably between the studies, and most ICF core sets were validated only once for a single target population or from a single perspective. The comprehensive core sets were validated more often than the brief core sets, and core sets for stroke and low back pain were validated most often.

 

Conclusion: The results of the current study show that only 66% of the existing ICF core sets are validated. Many of the validation studies are conducted in a European context and from a single perspective. More validation studies of ICF core sets from the perspective of both patients and professionals are needed.

Disability & inclusion survey, Malakal Protection of Civilians site

International Organization for Migration’s Displacement Tracking Matrix (IOM DTM)
February 2021

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The International Organization for Migration’s Displacement Tracking Matrix (IOM DTM), Protection and Mental Health and Psycho-Social Support teams joined efforts with Humanity & Inclusion (HI) to undertake an assessment of the level of access to services and the barriers faced by persons with disabilities within Malakal Protection of Civilian site (PoC site). The United Nations High Commissioner for Refugees (UNHCR) and the Danish Refugee Council (DRC) contributed to the qualitative component of the study as the main Protection and Camp Coordination and Camp Management (CCCM) actors operating within the PoC site. The study, based on data collected between March 2020 and June 2020, aims to improve the knowledge base available to the humanitarian community about access to services by persons with disabilities living in the site. It provides a quantitative estimate of the prevalence of disabilities among the IDP population and an assessment of the barriers faced by persons with disability in accessing humanitarian services across sectors. It also seeks to empower persons with disabilities living within the PoC site, giving them the opportunity to express their concerns and preferences with regards to possible solutions and targeted interventions. It is hoped that the resulting data will help camp management and other service providers operating within Malakal PoC site, including IOM, UNHCR and DRC, to better account for the concerns and needs of persons with disability in humanitarian programming and service delivery. This study builds onto and expands previous studies in Naivasha IDP Camp (formerly Wau PoC AA Site) and Bentiu PoC Site.

Breaking down barriers to travel. Championing disability inclusive and accessible travel

AYLING-SMITH, Verity
December 2020

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Inclusivity is a key element to exceptional travel experiences – enabling individuals all over the world to experience diverse countries, cultures and opportunities. Yet often, disability inclusion is not at the forefront of travel products and services.

This report will support travel providers to understand why disability inclusion matters to the industry whilst celebrating and learning from providers already striving to be more inclusive through their innovative practices

 

To gather stories and examples of best practice from within the travel industry, we developed a “Call for Case Studies” survey which was distributed to both Leonard Cheshire and Expedia Group’s networks. From these submissions, we selected examples which highlighted innovative practice and represented our key themes of the report

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). 

Lymphatic filariasis in Uganda: Knowledge, attitudes and practices

DIXON, Ruth
October 2020

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This knowledge, attitudes and practices (KAP) study aimed to assess the KAP relating to lymphatic filariasis (LF) morbidity and morbidity management (MMDP) in Uganda in order to plan large-scale interventions.

The objectives for the study were to obtain baseline data on KAP regarding LF morbidity and its management; to establish current efforts in specific districts/regions to address morbidity and its management; and to assess the anticipated acceptance of interventions and identify potential barriers. The study used mixed methods including a quantitative household survey and qualitative key informant interviews and focus group discussions with people living with chronic conditions related to LF.

Accountability, feedback & complaints mechanisms in humanitarian responses to migration

KAHN, Clea
June 2020

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This guidance aims to give humanitarian actors a guidance for developing their accountability mechanisms in the context of mixed migration, with a focus on complaints and feedback mechanisms. Excellent guidance already exists on how to implement feedback and complaint mechanisms in humanitarian contexts, and this is not intended to replace or duplicate those. It should be read as a supplement, to provide additional reflection for humanitarian actors working in migration contexts.

The development of this guidance was based on a review of existing literature, including research studies, guidelines and training materials. More than 30 interviews were conducted with representatives of more than 20 organisations working in Africa, the Americas, the Middle East and Europe. Particular support was received from Start Network’s MERF member organisations.

COVID-19 Disability Rights Monitor

2020

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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.

Inclusion of persons with disabilities in humanitarian action. Case studies collection 2019. 39 examples of field practices, and learnings from 20 countries, for all phases of humanitarian response

PALMER, Tom
et al
December 2019

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Published at the same time as the Inter-Agency Standing Committee (IASC) Guidelines on Inclusion of Persons with Disabilities in Humanitarian Action, this report aims to support their uptake and promote learning by example. This report presents 39 short case studies on inclusive practices for persons with disabilities in humanitarian action and disaster risk reduction (DRR). It is designed for humanitarian stakeholders with limited experience of working with and for persons with disabilities, as well as for organizations of persons with disabilities (OPDs) planning to engage in humanitarian action and DRR. The report draws lessons from field practices, but does not provide technical guidance. The IASC Guidelines are the reference document to seek in-depth theoretical and technical information

 

The case studies focus on:

  • Inclusive disaster risk reduction and preparedness
  • Collecting and using disability disaggregated data for assessments and programming.
  • Participation of persons with disabilities and their representative organizations in humanitarian response and recovery
  • Removing barriers to access humanitarian assistance and protection.
  • Influencing coordination mechanisms and resource mobilization to be inclusive

 

The evidence presented in this report was identified in 2017-2018 through a desk review of publicly available reports and internal documents on projects implemented by CBM, HI and IDA members, as well as their partners and affiliate members. Field visits to Lebanon, Jordan, Kenya, Nepal, and the Philippines conducted in 2018 also informed the case-study collection and documentation

Content and Quality of Motor Initiatives in the Support of People With Profound Intellectual and Multiple Disabilities

VAN ALPHEN, Helena J M
WANINGE, Aly
MINNAERT, Alexander E M G
VAN DER PUTTEN, Annette A J
2019

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Motor activation is rarely integrated into the support of people with profound intellectual and multiple disabilities (PIMD), which might be the result of the limited evidence-based knowledge in this field. Practitioners have recently been developing several motor initiatives for people with PIMD, but it remains unclear about what core elements the motor initiatives actually consist of and to what level of quality it is implemented in practice. This study aims to offer an overview and analysis of the content and quality of motor initiatives actually in use for people with PIMD. Motor initiatives were explored by asking practitioners to complete an online inventory form. Documents, expert knowledge, and observations were used to collect data about the characteristics of the motor initiatives. The quality of the motor initiatives which met our eligibility criteria, was analyzed on the basis of the level of evidence for their effectiveness. The inventory yielded 118 motor initiatives of which 17 met the eligibility criteria. We identified four motor initiatives reflecting an approach to motorically activate people with PIMD within various activities, three including power-assisted exercises, three with aquatic exercises, two frameworks which integrated motor activities into their daily programs, two methods which included small-scale activities, two rhythmic movement therapies, and one program including gross motor activities. We found limited indications for descriptive evidence from 17 initiatives, limited or no indications for theoretical evidence from 12 and five initiatives respectively, and none of the initiatives provided a causal level of evidence for effectiveness. A wide variety of motor initiatives is used in current practice to activate persons with PIMD, although their effectiveness is actually unproven. Science and practice should cooperate to develop an evidence-based understanding to ensure more evidence-based support for the motor activation of people with PIMD in the future.

Preferences regarding the way of use and design of a work ability prognosis support tool: a focus group study among professionals

LOUWERSE, Ilse
HUYSMANS, Maaike A
VAN RIJSSEN, Jolanda H J
OVERVLIET, Joyce
VAN DER BEEK, Allard J
ANEMA, Johannes R
November 2019

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Purpose: To explore the preferable way of use and design of a work ability prognosis support tool for insurance physicians (IPs) and labour experts (LEs), based on a prediction model for future changes in work ability among individuals applying for a work disability benefit.

 

Methods: We conducted three focus groups with professionals of the Dutch Social Security Institute (17 IPs and 7 LEs). Data were audio recorded and qualitatively analysed according to the main principles of thematic analysis.

 

Results: Clarity and ease of use were mentioned as important features of the tool. Most professionals preferred to make their own judgement during the work disability assessment interview with the claimant and afterwards verify their evaluation with the tool. Concerning preferences on the design of the tool, dividing work disability claimants into categories based on the outcome of the prediction model was experienced as the most straightforward and clear way of presenting the results. Professionals expected that this encourages them to use the tool and act accordingly.

 

Conclusions: The tool should be easy to access and interpret, to increase the chance that professionals will use it. This way it can optimally help professionals making accurate prognoses of future changes in work ability.

Social insurance literacy: a scoping review on how to define and measure it

STAHL, Christian
KARLSSON, Elin A
SANDQVIST, Jan
HENSING, Gunnel
BROUWER, Sandra
FRIBERG, Emilie
MACEACHEN, Ellen
October 2019

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Purpose: Sickness insurance and workers’ compensation systems decide on peoples’ eligibility for benefits, and are commonly based on medical certificates and assessments of work ability. Systems differ in the extent to which they preserve clients’ dignity and right to fair assessments. In this article, we define a new concept for studying interactions between individuals and systems: social insurance literacy, which concerns how well people understand the different procedures and regulations in social insurance systems, and how well systems communicate with clients in order to help them understand the system.

 

Methods: The concept was defined through a scoping literature review of related concepts, a conceptual re-analysis in relation to the social insurance field, and a following workshop.

 

Results: Five related concepts were reviewed for definitions and operationalizations: health literacy, financial/economic literacy, legal capability/ability, social security literacy, and insurance literacy.

 

Conclusions: Social insurance literacy is defined as the extent to which individuals can obtain, understand and act on information in a social insurance system, related to the comprehensibility of the information provided by the system. This definition is rooted in theories from sociology, social medicine and public health. In the next step, a measure for the concept will be developed based on this review.

Rapport d’évaluation rapide de la situation des personnes handicapées nouvellement déplacées sur les sites de Awaridi, NGuel Madou Mai, Gorodi - Dalabouyari et Château à Diffa suite aux derniers incidents dans la commune du Gueskerou

HUMANITY & INCLUSION (HI)
April 2019

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Rapid assessment report on the situation of people with disabilities newly displaced on Awaridi sites, NGuel Madou Mai, Gorodi - Dalabouyari and Castle in Diffa following the latest incidents in the commune of Gueskerou, Niger.

The evaluation focused on elements of qualitative analysis via collective interviews (focus groups), individual interviews and testimonials on the five selected sites. A total of 169 people were interviewed, through six focus groups and 70 individual interviews. These populations are essentially composed of disabled people, women and children displaced by recent security incidents in the country.

 

Urgent, short and medium term measures are identified

Communication Matters!

Light for the World
January 2019

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The research Communication Matters! shows which obstacles persons with disabilities face in accessing public information and services. The research took place in three districts in the province of Pursat. 1171 persons with disabilities in 229 villages are reached.

Due to the research, many persons with disabilities were able to share their stories for the first time. Many persons were also found for the first time, because the team made an effort to visit everyone in the village.

Inclusive services for persons with disabilities in Jadimura Camp, Cox's Bazar

HUMANITY & INCLUSION (HI)
2019

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In November 2018, with the support of UK Aid, Humanity & Inclusion (HI) conducted a participatory assessment of access to humanitarian assistance for persons with disabilities in Jadimura Camp, Teknaf, Cox’s Bazar District. The team evaluated both the barriers for persons with disabilities, as well as the facilitators that improve access to such assistance. They surveyed 63 refugees with disabilities including men, women, boys, and girls, in addition to 11 humanitarian service providers working in the camp.

Headline facts and recommendations are presented.

Exploring the experiences of students with visual impairments at the University of Botswana

OATS, Reginald
DISELE, Chawapiwa
2019

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Purpose: This paper sought to document the responsiveness of the University of Botswana towards the academic needs of students with visual impairments. The study examined the academic experiences of students with visual impairments enrolled at the University and explored their information-seeking needs. The study was informed by the theory of social justice.

Method: This was a qualitative study. Data was collected from students with visual impairments and academic staff from different faculties at the University of Botswana, through document analysis, interviews and observation techniques.

Results: The findings revealed that students with visual impairments experience extra challenges compared to students without disabilities. This is mainly because they do not get full support to enable them to excel academically. Furthermore, lecturers use teaching methodologies that do not accommodate these students, and learning materials are not adapted to formats suitable for them. Access to information is another major concern that hinders the participation of students with visual impairments in tertiary institutions.

Conclusion: The study recommends that lecturers need to be trained on suitable methods to teach students with visual impairments and how best to deliver academic content to them.

 

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

Unmet needs and use of assistive products in two districts of Bangladesh: Findings from a household survey

PRYOR, Wesley
NGUYEN, Liem
ISLAM, Qumrun Naher
JALAL, Faruk, Ahmed
MANJULA, Marella
December 2018

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Access to assistive products (AP) is an under-researched public health issue. Using an adaptation of a draft World Health Organization tool—the ‘Assistive Technology Assessment—Needs (ATA-N)’ for measuring unmet needs and use of AP, we aimed to understand characteristics of AP users, self-reported needs and unmet needs for AP, and current access patterns in Bangladesh. The ATA-N was incorporated in a Rapid Assessment of Disability (RAD), a population-based survey to estimate prevalence and correlates of disability. In each of two unions of Kurigram and Narsingdi districts, 60 clusters of 50 people each aged two years and older were selected using a two-staged cluster random sampling process, of whom, 4250 (59% Female; 41% Male) were adults, including 333 using AP. We estimate 7.1% of the studied population used any AP. AP use is positively associated with age and self-reported functional difficulty. The proportion of people using AP is higher for mobility than for sensory and cognitive difficulties. Of all people with any functional difficulty, 71% self-reported an unmet need for AP. Most products were home or self-made, at low cost, but provided benefits. Needs and unmet needs for AP are high, especially for people with greater functional difficulties. Assessing unmet needs for AP revealed important barriers to scale that can inform policy and practice.

Int. J. Environ. Res. Public Health 2018, 15(12), 2901;
doi:10.3390/ijerph15122901

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

ASAI, Yahoko
et al
July 2018

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

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

The study conducted a literature review, quantitative data collection as well as qualitative data collection. Quantitative data was collected from 6,381 persons of randomly sampled 1,159 households in Azraq and Zaatari camps and Irbid between October 2017 and January 2018. Twenty-five Key Informant Interviews (KIIs) and 3 Focus Group Discussions (FGDs) were also conducted between November 2017 and January 2018 to elicit deeper insights on the educational situation of children with and without disabilities

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