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‘We create our own small world’: daily realities of mothers of disabled children in a South African urban settlement

VAN DER MARK, Elise J
CONRADIE, Ina
DEDDING, Christine W M
BROERSE, Jacqueline E W
2018

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Parents of disabled children face many challenges. Understanding their experiences and acknowledging contextual influences is vital in developing intervention strategies that fit their daily realities. However, studies of parents from a resource-poor context are particularly scarce. This ethnographic study with 30 mothers from a South African township (15 semi-structured interviews and 24 participatory group sessions) unearths how mothers care on their own, in an isolated manner. The complexity of low living standards, being poorly supported by care structures and networks, believing in being the best carer, distrusting others due to a violent context, and resigning towards life shape and are shaped by this solitary care responsibility. For disability inclusive development to be successful, programmes should support mothers by sharing the care responsibility taking into account the isolated nature of mothers’ lives and the impact of poverty. This can provide room for these mothers to increase the well-being of themselves and their children.

Challenges of inclusion: a qualitative study exploring barriers and pathways to inclusion of persons with mental disabilities in technical and vocational education and training programmes in East Africa

EBUENYI, Ikenna D
ROTTENBURG, Esther S
BUNDERS-AELEN, Joske F G
REGEER, Barbara J
November 2018

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Purpose: To explore barriers and pathways to the inclusion of persons with mental and intellectual disabilities in technical and vocational education and training programmes in four East African countries, in order to pave the way to greater inclusion.

 

Materials and methods: An explorative, qualitative study including 10 in-depth interviews and a group discussion was conducted with coordinators of different programmes in four East African countries. Two independent researchers coded the interviews inductively using Atlas.ti. The underlying framework used is the culture, structure, and practice model.

 

Results: Barriers and pathways to inclusion were found in the three interrelated components of the model. They are mutually reinforcing and are thus not independent of one another. Barriers regarding culture include negative attitudes towards persons with mental illnesses, structural barriers relate to exclusion from primary school, rigid curricula and untrained teachers and unclear policies. Culture and structure hence severely hinder a practice of including persons with mental disabilities in technical and vocational education and training programmes. Pathways suggested are aiming for a clearer policy, more flexible curricula, improved teacher training and more inclusive attitudes.

 

Conclusions: In order to overcome the identified complex barriers, systemic changes are necessary. Suggested pathways for programme coordinators serve as a starting point.

At risk of exclusion from CRPD and SDGs implementation: Inequality and persons with deafblindness. Initial global report on situation and rights of persons with deafblindness

JENSEN, Rune
et al
September 2018

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Representing between 0.2% to 2% of the population, persons with deafblindness are a very diverse yet hidden group and are, overall, more likely to be poor and unemployed, and with lower educational outcomes. Because deafblindness is less well-known and often misunderstood, people struggle to obtain the right support, and are often excluded from both development and disability programmes. This initial global report on the situation of persons with deafblindness seeks to start a dialogue between international disability rights and development stakeholders, and is based on research undertaken by the World Federation of the Deafblind (WFDB) combining the largest population-based analysis of persons with deafblindness conducted to date (disaggregation of 22 population-based surveys from low, middle and high-income countries), an academic literature review, two surveys conducted among members and partners of WFDB and Sense International. Women and men with deafblindness from across the world took part in the Helen Keller World Conference in June 2018, and were consulted to confirm the findings and elaborate on the recommendations for this report.

 

Data and discussion are presented on people with deafblindess and: inequality; poverty; work; education; health; participation on political and public life; and social life. Datasets are included. 

 

Global Disability Summit 2018 - Summary of commitments

August 2018

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The key objective of the Global Disability Summit was to deliver ambitious new global and national level commitments on disability inclusion. National governments and other organisations made 170 sets of commitments around the four central themes of the Summit (ensuring dignity and respect for all, inclusive education, routes to economic empowerment and harnessing technology and innovation), as well as the two cross-cutting themes (women and girls with disabilities and conflict and humanitarian contexts), and data disaggregation.

 

Commitments made can be viewed in full on: https://www.gov.uk/government/collections/global-disability-summit-commitments

 

Global Disability Summit - commitments

August 2018

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A major outcome of the Global Disability Summit, July 2018, was the commitments of a large number of organisations to achieve the rights of people with disabilities in developing countires.

The commitments of each organisation are provided in the same format and are categorised by summit theme:

  1. Dignity and respect for all
  2. Inclusive Education
  3. Economic Empowerment
  4. Harnessing Technology and Innovation

Organisations making commitments are grouped in the following categories:

  • National Governments
  • Multilateral organisations
  • Private Sector organisations
  • Foundations
  • Civil society organisations
  • Research organisations
  • Other organisations

 

Access to assistive products in Kurigram and Narsingdi, Bangladesh. Policy brief 2.

HUMANITY & INCLUSION BANGLADESH
et al
August 2018

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This ‘policy brief’ outlines findings on Assistive technology and Products (AP) needs, unmet needs and access patterns arising the Rapid Assessment of Disability (RAD) study conducted in 2016 and 2017, in partnership between the Bangladesh Bureau of Statistics (BBS) and Humanity & Inclusion (HI) Bangladesh, with technical oversight from the Nossal Institute for Global Health, University of Melbourne, Australia. The study was part of the HI project: Towards Global Health: Strengthening the Rehabilitation Sector through Civil Society funded by the European Union. Findings from the 4254 adults surveyed in the two districts are reported here.

 

The purpose of this component of the RAD study was to learn about the usage of AP, characteristics of AP users, barriers to use of AP, unmet and met needs of AP, and to highlight major policy implications for AP service provision, in two target areas of Kurigram and Narsingdi. The survey includes an adapted version of Washington Group (WG) ‘short set’ of Disability Questions. A modified version of the WHO’s draft Assistive Technology Assessment Tool (needs module) – or the ‘ATA-needs’, was also implemented. Findings from this study also helped modify and improve the draft ATA-needs tool

Improving social inclusion and empowerment for people with disabilities in low- and middle-income countries: why does it matter and what works?

WHITE, Howard
SARAN, Ashrita
POLLOCK, Sarah
KUPER, Hannah
July 2018

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The aim of the Rapid Evidence Assessment (REA) is to provide an assessment of the effectiveness of interventions to improve social inclusion and empowerment for people with disabilities in low- and middle-income countries (LMICs). The studies included in this REA are taken from the Disability EGM prepared by the Campbell Collaboration for DFID under the auspices of the Centre for Excellence for Development Impact and Learning (CEDIL). Eligible studies included systematic reviews and impact evaluations published in English from 2000 onwards that assessed the effectiveness of interventions for people with disabilities in LMICs. The REA focused on studies identified by the EGM process that included ‘social inclusion’ or ‘empowerment’ as study outcomes and used the World Health Organization CBR matrix as a framework to categorise the different interventions and outcomes considered by the studies available. Evidence limitations and gaps were identified. 

There were 16 eligible primary studies, including studies conducted in 12 countries: Bangladesh (two studies), Brazil, Chile, China (two studies), Ethiopia, India (three studies), Kenya (two studies), Malaysia, Thailand, Turkey, Uganda, and Vietnam (two studies). Five of the studies concern interventions for people with physical or sensory impairments, nine for people with mental health or neurological conditions, and two for all disability types.

Missing millions: How older people with disabilities are excluded from humanitarian response

SHEPPARD, Phillip
POLACK, Sarah
McGIVERN, Madeleine
July 2018

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The aim of this study was to explore the experiences of older people with disabilities across a range of humanitarian settings, considering:

  • whether older people with disabilities have additional needs and challenges accessing humanitarian assistance and protection
  • what factors facilitate or limit access by older people with disabilities to humanitarian assistance and protection
  • to what extent is humanitarian response inclusive of older people with disabilities

A systematic literature review of published studies was conducted. Key online humanitarian guidelines were explored to review how far they explicitly address older people with disabilities. Data from six population-based disability surveys comparing the living situation of older people with and without disabilities were analysed. These included databases from two crises-affected populations in Haiti (post-earthquake) and Palestine. Data from four non-humanitarian settings was also reviewed to explore more broadly the situation for older people with disabilities – India, Guatemala, Cameroon and Nepal. Interviews were held with older people with disabilities, members of their families and local key informants in two conflict-affected populations in Ndutu and Mtendeli refugee camps in Western Tanzania, and Donetsk and Luhansk regions of Eastern Ukraine to find out about their experiences. Staff of five international agencies working in humanitarian response were also interviewed. 

 

Findings highlight particular issues facing older people with disabilities in humanitarian crises: more risk escaping from danger;  barriers to accessing social protection and work; barriers to accessing health and rehabilitation services; barriers to accessing food and other essentials; unsuitable housing and poor living conditions;  insecurity and discrimination; threats to dignity and independence; social isolation and loneliness; risks to mental health; and missing from humanitarian response.

 

A table brings together the findings from the different components of the research to show the needs, risks, barriers and enablers for older people with disabilities identified in the research. Recommendations are provided to humanitarian donors, policy makers and practitioners

Situation of persons with disabilities in Lebanon.

COMBAZ, Emilie
July 2018

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This K4D helpdesk report identifies information since 2013 concerning:

  • data on the state of persons with disabilities in Lebanon
  • assessments of laws on the rights of persons with disabilities in Lebanon
  • analyses of the political, social, cultural, and economic context for persons with disabilities in Lebanon

Issues particular to persons with disabilities amongst Syrian refugees within these aspects are identified where possible.

The state of knowledge and gaps are discussed. 

Scaling up inclusive approaches for marginalised and vulnerable people. K4D emerging issues report

CARTER, Becky
JOSHI, Anu
REMME, Michelle
July 2018

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This rapid review summarises the evidence on how to scale up inclusive approaches to complex social change. It looks at how to design scalable inclusive change interventions, as well as how to plan and manage the scale-up process. Focusing on interventions with the aim of reaching the most marginalised and transform social norms, it covers programmes aiming to deliver inclusive outcomes for women and girls (with a particular focus on preventing violence against women and girls) and persons with disabilities. To date, many interventions seeking to change harmful gender and disability norms have been implemented as small-scale projects. There are limited experiences of scale-up and fewer evaluations of these experiences. However, there are some documented case studies as well as emerging analysis that draw out lessons learned. From this evidence base, this rapid desk review identifies eight critical issues commonly highlighted as important considerations when scaling up inclusive change interventions:

1. Opportunities for systemic approach, including integrating political and community-level scale-up, and coordinating across multiple sectors and stakeholders

2. Political support for scale-up

3. Strategic choices: balancing reach, speed, cost, quality, equity, and sustainability

4. Catalysing change: tipping points, diffusion effects, and local champions

5. Locally grounded, participatory, and adaptive approaches

6. Long-term approaches with funding models to match

7. Cost-effective and financially feasible scale-up strategies

8. Measuring impact and sustainability.

 

Scale-up pathways are discussed including: horizontal, vertical, functional and organisational.

A number of case studies are given.

Monitoring employment rights of people with disabilities in Kathmandu, Nepal, Holistic report 2018

PRASAI, Sagar
PANT, Aashish
June 2018

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This report presents the results of a monitoring project on the employment situation of persons with disabilities in Nepal. The report is one step toward a comprehensive evaluation of Nepal’s constitutional, legal and policy framework. Findings scrutinise the country’s implementation of laws and policies based on the daily life experiences of persons with disabilities. These experiences are used to assess the level of rights violations, the reasons behind those violations, and possible solutions. This holistic report offers an in-depth analysis of the life circumstances for persons with disabilities, with a specific focus on employment. The analysis has been conducted in relation to fundamental human rights principles of dignity, autonomy, participation, inclusion and accessibility, non-discrimination and equality and respect for difference. The report highlights the degree of implementation of the constitution, laws, policies and programs, enacted to protect and advance the human rights, and specifically the employment rights, of persons with disabilities. The report also highlights the experiences of persons with disabilities with reflection of societal attitudes. 

This study is part of a larger initiative called the DRPI AWARE (Asian Workplace Approach that Respects Equality) project. In each of the three monitoring sites (Hyderabad, Dhaka, Kathmandu), monitors used an interview and focus group guide to capture a specialized data set and analyze violations of the right to work and employment.

Disability stigma in developing countries

ROHWERDER, Brigitte
May 2018

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This K4D helpdesk report, commissioned by UK DFID, answers the question "What are the core drivers behind stereotypes, prejudice (including pity/shame etc), and harmful practices against persons with disabilities in developing countries and what promising strategies/pathways for addressing these drivers have been identified?" using desk research.

 

Across the world stereotypes, prejudice, and stigma contribute to the discrimination and exclusion experienced by people with disabilities and their families in all aspects of their lives. This rapid review looks at available evidence on the drivers of disability stigma in developing countries, and promising strategies for addressing these. Most of the available evidence uncovered by this rapid review comes from Sub-Saharan Africa, and is from a mix of academic and grey literature. Evidence gaps remain. The available literature has focused more on studying the victims of stigmatisation than the stigmatisers. 

Inclusive service delivery for persons with disabilities in Mongolia

MAMUTKULOV, Raushenbek
ASIAN DEVELOPMENT BANK (ADB)
2018

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The Ensuring Inclusiveness and Service Delivery for Persons with Disabilities (PWDs) project in Mongolia aims to ensure access to improved services, employment opportunities, and more support through social welfare reform for PWDs.

Estimates of disability prevalence in Mongolia tend to be underreported, especially among older people, girls, and women, thus leaving a substantial number of persons with disabilities (PWDs) without the necessary services and protection. Early identification of disability is inadequate and current disability assessments follow an outdated, narrow medical approach. Many people perceive PWDs to be incapable of living independently and a burden to society.

A brief overview is given of a project aiming to ensure access to services and employment for PWDs to increase their autonomy and contribution to the economy and society in general.

(ADB Brief, Social Protection Brief, No.91)

Good practice guide: embedding inclusion of older people and people with disabilities in humanitarian policy and practice Lessons learnt from the ADCAP programme

AKERKAR, Supriya
BHARDWAJ, Rhea
2018

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This guide shares good practices and challenges that have emerged through the experience of the Age and Disability Capacity Programme (ADCAP) implementing partners, in embedding inclusion of older people and people with disabilities within their humanitarian policies and practices. All mainstream and specialist organisations engaged in humanitarian responses can learn and benefit from this experience. This guide complements the ‘Humanitarian inclusion standards for older people and people with disabilities’ (see Appendix 4), by documenting practices that will help humanitarian organisations to systematically include older people and people with disabilities.

Nine change themes that reflect successful inclusion practices emerging from the ADCAP experience are presented. Each theme includes analysis — using examples of action from ADCAP implementing organisations, a set of good practice action points, and case studies detailing how change was brought about in different implementing organisations

Recognizing difference: in/visibility in the everyday life of individuals with facial limb absence

YARON, Gili
MEERSHOEK, Agnes
WIDDERSHOVEN, Guy
SLATMAN, Jenny
2018

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People who lack part(s) of their face have a visibly different appearance both due to their facial difference itself and the medical aids that they use to cover it (e.g. prostheses, bandages). In this article, we draw on interviews with affected individuals in order to investigate how visible difference features in their everyday experience. The visibility of their facial difference, we show, comes into play as they interact with various others in the contexts of their daily life. However, respondents’ visibility manifests in different ways, depending on whether they cover or uncover their facial difference. These different modes of visibility make for distinct ‘visibility experiences’, as participants meet others who notice – or fail to notice – their atypical appearance. By exploring these experiences, our article provides insights into the role of visibility in interviewees’ everyday life, and demonstrates how they actively negotiate their social recognition within encounters with various others.

Promoting rights of people with disabilities in Indonesia (UN Partnership to Promote the Rights of Persons with Disabilities / UNPRPD) - Special edition, ILO Jakarta newsletter

ILO Jakarta
February 2018

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One of the first implementing countries of the UNPRPD was Indonesia. In Indonesia the project was jointly implemented between the ILO, WHO and UNESCO, in partnership with the national entities such as the Association of Indonesian Municipalities (APEKSI) and various disability rights non-governmental organizations (NGOs).

 

The newsletter has items on: 

  • Towards inclusive cities - Fourteen mayors across Indonesia signed the Charter of the Network of Indonesian Mayors for Inclusive Cities in Indonesia during the UN-sponsored High-Level Meeting of Mayors for Inclusive Cities
  • Towards inclusive employment - Mojokerto city in East Java is the first city in the country to conduct an inclusive job fair at the district level. The first two-day inclusive job fair was organized in 2014 and it has become an annual event
  • Employment assessments for people iwth disabilities - In collaboration with the University of Indonesia, the ILO conducted a study on Mapping Persons with Disabilities in Indonesia. The study reveals that there is an urgent need to increase the labour-force participation of people with disabilities
  • Rapid Assessment on Employment for Persons with Disabilities

 

Alternative report on the implementation of the 2030 programm in Niger

NIGER FEDERATION OF DISABLED PEOPLE (FNPH)
February 2018

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This report on the assessment of progress made in Niger in the implementation of the 2030 program on the case of disabled persons was prepared by The Niger Federation of Disabled People (FNPH). The FNPH was supported by the West African Federation of Disabled People's Associations (FOAPH) and its strategic partners such as: the International Disability Alliance (IDA), Humanity and Inclusion (HI) and CBM.

 

It is the result of participatory work drawing on consultations with relevant stakeholders (Human Rights Organizations, Organizations for Disabled People (DPOs) and development partners). It is based on the most recent data available on disability, from 2014 to 2017.

 

This report examines, in detail, the implementation of four (04) Sustainable Development Goals which include: SDGs 4, 8, 10 and 16  and focuses on the following topics:

 

  • Education – Vocational training ;         
  • Work and Employment;
  • Equality and non-discrimination;
  • Protection against all kinds of violence and abuse;
  • Access to justice in equality conditions;
  • Participation in decision-making;
  • Public access to information and protection of basic freedoms.

Disability and vocational rehabilitation in rural settings

HARLEY, Debra
et al
2018

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A graduate student textbook offered in 39 chapters, each with different authors and subjects. Abstracts, test questions and citations are freely available on-line. Full text is charged for. The book surveys rehabilitation and vocational programs aiding persons with disabilities in remote and developing areas in the U.S. and abroad. Contributors discuss longstanding challenges to these communities, most notably economic and environmental obstacles and ongoing barriers to service delivery, as well as their resilience and strengths. Considerations are largely of the US but there is a chapter on each of Asia and Pacific region, Australasia, Canada, Mexico, India, Turkey, Colombia and the UK. 

 

Caregivers' views on stigmatisation and discrimination of people affected by leprosy in Ghana

ASAMPONG, Emmanuel
DAKO-GYEKE, Mavis
ODURO, Razak
January 2018

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In Ghana, the social interpretation of leprosy regardless of the language, culture and tradition engenders stigmatisation and discrimination that leads to social rejection and exclusion of persons who have been cured of the disease. Often, these persons are cared for by relatives who happen to live with them in a confined place. From the views of these caregivers, this paper identifies areas of stigmatising and discriminatory tendencies against people affected by leprosy who reside in a Leprosarium in Accra. A qualitative interview with semi-structured interviews were conducted for twenty caregivers.

Disability-inclusive social protection research in Nepal: A national overview with a case study from Tanahun district

BANKS, Lena M
et al
2018

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Social protection programmes are increasingly being adopted in low- and middle-income countries as a set of strategies for poverty reduction, improving livelihoods and decreasing inequality. Due to high levels of poverty and social exclusion, people with disabilities – who comprise upwards of 15% of the global population – have been identified as a key target group for inclusion in social protection, in both international guidelines and in national strategies. However, there is currently a lack of evidence on whether these programmes are adequately reaching and meeting the needs of people with disabilities.

The aim of this research was to assess the extent to which social protection systems in Nepal and Vietnam address the needs of people with disabilities. This research uses a mixed methods approach, combining a national policy analysis with district-level qualitative and quantitative studies in each country

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