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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. 

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

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). 

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.

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

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)

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

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

ASAI, Yahoko
et al
July 2018

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Humanity & Inclusion (HI) and iMMAP conducted a study concerned 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 2,495 persons of randomly sampled 506 households in the urban setting in Bar Elias as well as Informal Tented Settlements (ITS) in Bar Elias and Arsal in December 2017. Fourteen Key Informant Interviews (KII) were also conducted in December 2017 to elicit deeper insights on the educational situation of children with and without disabilities.

Collaboration in Inclusive Research: Competencies Considered Important for People With and Without Intellectual Disabilities

EMBREGTS, Petri J C M
TAMINIAU, Elsbeth F
HEERKENS, Luciënne
SCHIPPERS, Alice P
VAN HOVE, Geert
2018

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With inclusive research being an emerging field of interest, there is growing recognition that establishing collaborative relationships between researchers with and without ID entails specific demands. However, since studies on collaboration in inclusive research merely provide individual reports on experiences and challenges in one particular research project, building a shared knowledge base of concrete competencies considered important for those involved merits attention. This study contributes to a shared knowledge base in asking people with and without ID with (experiential) knowledge of inclusive research for competencies they consider important in collaborating in inclusive research in general, that is, without reference to a specific research project they participated in. Researchers with and without ID, coaches, policy makers, and teachers involved in the education of people with ID participated in this study. Data were collected from a focus group, individual interviews, and expert meetings. Qualitative analysis was carried out

immediately after each moment of data collection, providing the use of increasing insights in each consecutive phase of data collection. Participants describe that establishing collaborative relationships between researchers with and without ID in inclusive research requires the commitment of both parties. They mentioned concrete competencies they consider important for people with and without ID to collaborate in inclusive research in the categories: building a mutual relationship, communicating, achieving a collaboration in which everyone involved can contribute, being aware of skills and developmental needs, and being aware of impact. Clearly, describing competencies for people with and without ID is not intended to exclude anyone who does not possess these competencies from collaboration in inclusive research. However to avoid “tokenism,” this study might contribute to effective participation of people with ID in inclusive research in providing concrete competencies considered important in collaboration.

Inclusive and safe urban mobility and Disaster Risk Management in developing countries

HUMANITY & INCLUSION (HI)
June 2018

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Disabled people are disproportionately affected by disasters owing to mobility difficulties in evacuation, lack of access to information or services and discrimination. When disasters occur, constraining external factors, such as unsafe roads and lack of accessible pedestrian and transport routes, create additional difficulties for coping with the situation. Developing cities vulnerable to disasters also are likely to have a greater proportion of the population with a disability, due to past injuries.

In this thematic brief, the importance of inclusive urban planning is emphasised. Urban mobility challenges relating to disasters discussed include: inaccessible disaster shelters, inaccessible means of evacuation and lack of information.

 

Case histories provided are: Building back better in Haiti; a focus on inclusive access and mobility; and Improving universal accessibility in Kathmandu, Nepal

 

Recommendations for improvements in policies and actions are given under the headings: 

1. Strengthening the policy and financial framework for safe and inclusive mobility action, based on evidence and through participative processes

2. Removing the barriers to safe and accessible mobility, focusing on: the built environment; transport and vehicles; people

Health information-seeking behaviour of visually impaired persons in Ibadan Metropolis, Nigeria

SALAMI, Karibou
2018

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Persons living with visual impairments form a major group of people with various types of impairments in African countries. Little has been reported about the means and forms of information they seek to cope with their environment, and studies in Nigeria specifically, have not explored health information-seeking behaviour of visually impaired persons. This paper documents the health information-seeking behaviour of visually impaired persons (VIPs) in Ibadan Metropolis. A standardized questionnaire was administered to 200 VIPs sampled from two health facilities in Ibadan Metropolis. Most (66%) of the VIPs were partially sighted, 43% reported health issues as their most worrying challenge, while 20% reportedly had daily unmet health information needs. VIPs accessed information about medication for ailments from friends (45%), adopted herbal medication (50.5%) and /or indulged in selfmedication (21%). They reportedly had worse health (9.5%) status, while 4.5% reportedly remained worse off emotionally. The study concludes that VIPs considered health challenges and limited access to health information as their major concerns. Care for visually impaired persons should be incorporated in the primary healthcare routine and school health curriculum. Media programmes are also required to sensitise the general public about health information needs of VIPs.

 

Disability and the Global South, 2018 Vol.5, No. 1

Childhood disability in Malaysia: a study of knowledge, attitudes and practices

MOORE, Katie
BEDFORD, Juliet
November 2017

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This study was carried out to assess the knowledge, attitudes and practices of society towards children with disabilities, the children themselves, and their peers in Malaysia. The study took place in Selangor, Kelantan, Sabah and Sarawak. There were 756 total respondents/participants including government ministries, community members, service providers, care givers and children and adolescents both with and without disabilities. 

Nigerian Teachers’ Understanding of Autism Spectrum Disorder: A Comparative Study of Teachers from Urban and Rural areas of Lagos State

ODUNSI, Remi
PREECE, David
GARNER, Philip
2017

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Purpose: Autism Spectrum Disorder (ASD) is a lifelong developmental disability characterised by difficulties in social interaction and social communication, and restricted and repetitive behaviour (American Psychiatric Association, 2013). Despite its prevalence the world over, there is a paucity of research in some areas such as education, particularly in sub-Saharan Africa. This paper attempts to address the gap by exploring teachers’ understanding of ASD in Nigeria.

 

Method: Using an adapted version of the Knowledge About Childhood Autism Among Health Workers (KCAHW) questionnaire (Bakare et al, 2008), a survey was conducted among 177 mainstream primary teachers from Lagos State (112 from eleven urban schools and 65 from four rural schools).

 

Results: The total mean score on the Adapted KCAHW questionnaire among all the participating teachers was 10.81 ± 4.13 out of a possible total of 16. The mean score for urban teachers was 11.21 ± 4.31, while the mean score for rural teachers was 10.11 ± 3.75. In total, 46% of the urban teachers and 31% of the rural teachers demonstrated a generally accurate knowledge of ASD, with 15% (23 urban teachers and 4 rural teachers) of the sample answering all questions correctly.  Over 50% of urban teachers and almost 70% of rural teachers surveyed had only a low or moderate understanding of ASD.

 

Conclusions: This research supports previous studies that identified low professional knowledge and understanding of ASD, and a need for improved professional education and training. 

 

Limitations: The focus was on only one state within Nigeria, and only on mainstream primary schools. Further research is necessary across the educational age range as well as different geographical areas in the country.

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