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Facilitating inclusion in disaster preparedness: A practical guide for CBOs

INTERNATIONAL INSTITUTE OF RURAL RECONSTRUCTION (IIRR)
Give2Asia
November 2018

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This guidebook was produced to build the capacity of Communities of Practice members on inclusive Disaster Risk Reduction (DRR). IIRR and Give2Asia hope that this guidebook will help CBOs in Asia make their disaster preparedness programs more inclusive and sensitive to the needs of vulnerable groups in communities.

There are 3 parts: 

Part 1: Principles and practice of inclusion in DRRM and disaster preparedness 

Part 2: Dimensions of Inclusive Disaster Preparedness

Part 3: Practical tools and strategies in inclusive disaster preparedness - including: Hazard vulnerability and capacity assessment; Early warning system and Emergency preparedness

 

This guidebook aims to:

1. Enable partner CBOs to delve into strategic planning, approaches and tools on Inclusive DRR;

2. Provide alternative learning avenues for sectors to shift paradigm: from looking at excluded groups as “the recipient, or an object” into a more equitable gender-fair and humane categorization, such as intervenors or pro-actors;

3. Provide samples of standard platforms and protocols on inclusive disaster risk assessment, structural framework, gender-mainstreaming and paralegal support systems

4. Develop a community of learning (COL) in sharing inclusion on rights, advocacy, livelihoods, and entitlements

Diagnostic study on Disabled Peoples’ Organisations and National Union of Organisations of the Disabled in Liberia

DEEPAK, Sunil
HARRIS, Naomi
November 2018

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A diagnostic study was carried out by a consultant to the DASU project in collaboration with the national umbrella organisation “National Union of Organizations of the
Disabled” (NUOD) to assess the institutional capacities of Disabled Peoples’ Organizations (DPOs) in Liberia. The study involved DPOs from the national capital Monrovia and in three counties – Bong, Grand Gedeh and Nimba.
The study included an initial Desk Review, collection of case studies from the field and visits to the counties to meet the county DPOs. Following these, a workshop was organised
in Monrovia in which representatives of NUOD and the concerned DPOs took part. The workshop looked at the strengths and challenges faced by NUOD and DPOs, focusing on the skills needed for stronger and active DPO leadership.

3rd World Disability & Rehabilitation Conference (WDRC 2018) - Book of abstracts

O'CONNOR, Loren
Ed
November 2018

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The 3rd World Disability & Rehabilitation Conference 2018 was held from 12th and 13th November 2018 in Kuala Lumpur, Malaysia. People with disabilities and researchers, practitioners, policy makers, industry experts, university faculty and organizations along with advocates and volunteers working with people with disabilities participated and presented their original and unpublished results of conceptual, constructive, empirical, experimental, experiential or theoretical work through abstract and poster presentation. Total 33 participants presented their abstract and poster throughout this conference. The theme of WDRC 2018 was “Global advocacy and rights of people with disabilities”

Ubuntu considered in light of exclusion of people with disabilities

NGUBANE-MOKIWA, Sindile A.
2018

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Background: This article emanates from a study funded by the KwaZulu-Natal chapter of South Africa’s National Research Foundation on the ‘Archaeology of Ubuntu’. It explores the notion of ubuntu and disability in a group of Zulu people from four communities within KwaZulu-Natal. The study is based on the notion that ubuntu is humaneness. Being human is linked to notions of care, respect and compassion.

 

Objectives: The article explores the treatment of people with disabilities from the elders’ perspectives in this community.

 

Method: This article is based on qualitative data resulting from structured interviews conducted in the KwaZulu-Natal Province between February and March 2015.

 

Results: The results reveal that society considered the birth of a disabled child as a curse from God and punishment from the ancestors. The results also indicate that people with disabilities were excluded from community activities; marrying a disabled person was unthinkable because they were stigmatised and dehumanised. The work of Hannah Arendt is used to interrogate people’s perceptions of others with disabilities in their communities.

 

Conclusion: The article posits that treatment of people with disabilities is not cast in stone but can be renegotiated and restructured through community engagement to represent genuine inclusion.

‘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.

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

MALLI, Melina Aikaterini
SAMS, Lara
FORRESTER-JONES, Rachel
MURPHY, Glynis
HENWOOD, Melanie
2018

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The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learn- ing disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well- being both of people with LD and their informal carers. Individuals with LD have lost social support and are experi- encing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for fur- ther discourse and research on the effects of austerity on people with LD and their family carers.

Adaptations from the prosthetic and intact limb during standing on a sway-referenced support surface for transtibial prosthesis users

RUSAW, David F
2018

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Purpose: 

To investigate the bilateral postural adaptations as a result of standing on an increasingly unstable sway-referenced support surface with both the intact and prosthetic limb for transtibial prosthesis users (TPUs).

 

Method: 

TPUs (n = 14) and matched controls (n = 14) stood quietly in multiple foot placement conditions (intact foot, prosthetic foot and both feet) on a sway-referenced support surface which matched surface rotation to the movement of the centre of pressure (CoP). Force and motion data were collected and used to analyse CoP mean position, displacement integral and force components under intact and prosthetic limbs.

 

Results: 

Significant differences were found between prosthesis users and controls in CoP mean position in anteroposterior (1.5 (95% CI, 1.2–1.8) cm) and mediolateral directions (3.1 (95% CI, 0.5–5.7) cm. CoP displacement integrals were significantly different greater for prosthesis user group in the anteroposterior direction. Force components differences were found in all planes (anteroposterior: 0.6 (95% CI, 0.4–0.8 N); mediolateral: 0.1 (95% CI, 0.0–0.2 N & 0.3 (95% CI, 0.2–0.4) N, inferosuperior: 2.2 (95% CI, 1.4–3.0) N).

 

Conclusions: 

TPUs have bilateral static and dynamic postural adaptations when standing on a sway-referenced support surface that is different to controls, and between prosthetic and intact sides. Results further support evidence highlighting importance of the intact limb in maintenance of postural control in prosthesis users. Differences indicate clinical treatment should be directed towards improving outcomes on the intact side.

Saving lives and leaving no one behind - The Gaibandha Model for disability-inclusive disaster risk reduction

ROTHE, Manuel
BROWN, David
NEUSCHAFER, Oliver
October 2018

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"The Gaibandha Model" good practices guide outlines a framework for successful disability-inclusive disaster risk reduction programming. It is based on the experience of CBM and its partners in implementing community-based disaster risk reduction programs in some of the most flood-affected communities in Bangladesh. The model puts people with disabilities at the center of disaster risk reduction. They are the agents for change, working with the community to improve local systems of disaster prevention, preparedness and response to become more accessible and inclusive.

Mainstreaming disability and making WASH programmes inclusive

ENFIELD, Sue
October 2018

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This rapid review synthesises evidence and literature on approaches that have worked in mainstreaming the disability agenda in WASH programming. It begins by exploring the overview of approaches to including disabled people in WASH programming and continues to discuss the barriers to access and consequences. In this section, there are specific and important WASH issues being emphasised including Menstural Hygiene Management (MHM), incontinence, Lymphatic Filariasis and Leprosy and high-density populations. Final section of the review discuss about practical guidance for inclusive WASH programming including the cost of inclusion that needs to be taken into consideration.

 

K4D helpdesk reports provide summaries of current research, evidence and lessons learned. This report was commissioned by the UK Department for International Development

Lived Experience of Psychosocial Disability and Social Inclusion: A Participatory Photovoice Study in Rural India and Nepal

FERNANDES, Helen Lea
CANTRILL, Stephanie
SHRESTHA, Ram, Lal
RAJ, Rachel, Belda
ALLCHIN, Becca
KAMAL, Raj
BUTCHER, Nicole
GRILLS, Nathan
2018

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Purpose: This study aimed to investigate the experiences of people living with a psychosocial disability in rural India and Nepal, and to highlight key barriers and enablers for inclusion.

 

Method: Participatory action research approaches and Photovoice methodology were employed to investigate the lived experience of 32 participants in rural India and Nepal. There were 12 participants and 4 caregivers of people with psychosocial disability from each of the two countries. Semi-structured interviews with study participants were transcribed and analysed thematically to answer the study question.

 

Results: The findings revealed themes related to various supports, meaningful engagement in activity, and community awareness. Among these categories were both enabling and impeding factors to inclusion, the presence or absence of which was typically associated with improvements or worsening of symptoms respectively.

 

Conclusions and Implications: This study underscores the need for integrated community-based approaches that are multisectoral, inclusive of family, and strengthen community responses. Photovoice was also shown to be a feasible research methodology for providing insights into the lived experience of people with psychosocial disability and for fostering their empowerment

Perceptions and satisfaction of caregivers regarding rehabilitation services from selected rehabilitation centres in the Western Cape

MLENZANA, Nondwe B.
EIDE, Arne H.
FRANTZ, Jose M.
2018

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Background: Understanding caregivers’ views on rehabilitation services is important as it may assist in informing healthcare services and patient management.

 

Objectives: The aim of this study was to explore caregivers’ perceptions and satisfaction regarding rehabilitation services in the Western Cape, South Africa, and to inform clinical practice and policy in this emerging field.

 

Method: This study used a descriptive, qualitative design using in-depth interviews with conveniently selected participants. Interviews were conducted with 13 caregivers of patients with: amputations (3), cerebrovascular accidents (5) and neuromuscular disorders (5). Thematic content analysis was conducted with the transcripts.

 

Results: Four key themes emerged, which were (1) financial difficulties, (2) caregiver and therapist relationships, (3) facility management and (4) caregiver experience with service delivery.

 

Conclusion: Based on the participants’ feedback, the rehabilitation services seem to be meeting the basic rehabilitation needs of the patients; however, the needs of the caregivers require attention.

Older adults’ perceptions of wearable technology hip protectors: implications for further research and development strategies

HALL, Alex
BOULTON, Elisabeth
STANMORE, Emma
2018

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Purpose: 

Hip fractures are an important public health issue. Ninety-five percent of hip fractures are caused by falls, with those at greatest risk including residents of long-term care facilities. Hip protectors can be effective in preventing hip fractures, but levels of acceptance and adherence may be low. We report on work to develop research into a new hip protector that aims to overcome some of the acceptance and adherence challenges.

 

Methods: 

We held five patient and public consultation events involving 147 older adults and 10 long-term care sector staff in the Midlands and North West of England. At each event, participants were shown the Fall-Safe Assist hip protector, which includes built-in mobile technology to record information about falls and summon help from caregivers.

 

Results: 

Participants were positive about the product’s potential utility and impact upon confidence in moving around. However, many participants held highly personal perceptions of their vulnerability and need, and expressed concerns about the esthetics and practicality of the accompanying underwear. Participants highlighted potential challenges from poor mobile connectivity, and expressed concerns about product cost.

 

Conclusions:

 Future research will need to ensure flexible and sensitive approaches to recruitment. Further refinement to the product design may be useful. Individual interviews and questionnaires would help capture participants’ perceptions on personal topics, and measures of changes in confidence. Research sites will need to be compatible with technological functionality. It will be necessary to have a robust protocol in place for withdrawal of the product at the end of any clinical research.

Making it work: experience of living with a person who falls due to multiple sclerosis

CARLING, Anna
NILSAGARD, Yiva
FORSBERG, Anette
October 2018

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Purpose: The purpose of this study was to describe how everyday life is experienced by next of kin sharing residence with a person who falls due to multiple sclerosis (MS).

 

Methods: Twenty face-to-face interviews were analysed using a qualitative content analysis.

 

Results: The overall theme “Making it work” represents the next of kin’s struggle to make life work. It comprises three themes: “Taking responsibility”, “Making adjustments”, and “Standing aside for someone else”. The two first themes reflect what relatives do to make the situation work, and the last theme represents what they give up.

 

Conclusion: Next of kin who share residence and everyday life with a person with MS are affected by that person’s occasional falls. They often take on the responsibility of preventing such falls and adapt their lives practically and emotionally. However, adaptation is neither always enough or always possible. In these cases, relatives often deprioritize their own needs and free time to make everyday life in the home work.

Lost in digitalization? Municipality employment of welfare technologies

FRENNERT, Susanne
2018

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Introduction:

Swedish municipalities face a number of daunting challenges; an aging population, the public’s increased demands and expectations on municipality services, and a strained economy to mention some. Welfare technology, a Scandinavian concept launched to promote digitalization, is seen as one solution to meet these challenges.

 

Objective: 

Despite these promises, few welfare technology applications are offered by local Swedish municipalities and care organizations. Numerous studies have shown that Swedish municipalities have a great interest in welfare technologies.

 

Methods: 

In this article, we draw on empirical research in one Swedish municipality. Through two case studies it is illustrated how technological change and municipality employment of welfare technologies are employed.

 

Results: 

These case studies show how core values of care are being lost in the quest for digitalization due to the lack of organizational skills and knowledge in transforming the relationship of caregiving and care-receiving through the use of digital technology.

 

Conclusions: 

Digitalization and welfare technologies deployed ought to represent and support the core values of caregiving and to receive care. Thus, digital transformation most likely will transform conditions for care receivers and working conditions for care workers. New work processes will evolve, which in turn produce new meanings of home help service work and caregiving.

Eating together as a social network intervention for people with mild intellectual disabilities: a theory-based evaluation

KRUITHOF, Kasper
SUURMOND, Jeanine
HARTING, Janneke
2018

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Purpose: People with mild intellectual disabilities (MID) generally live independently among the wider community. This can result in social exclusion and feelings of loneliness. Therefore, social work organizations aim to socially include people with MID through organizing activities in neighbourhoods that should lead to enlarged networks and increased societal participation. The “Communal Table” is such a, group-orientated, intervention that organizes monthly dinners in Amsterdam, the Netherlands. Because little is known about the effective- ness of interventions aiming to bring about social inclusion for people with MID we explored which types of participants were reached and whether and how the intervention brought about the intended outcomes.

 

Methods: We performed a theory-based evaluation, using participatory observations and qualitative interviews (n = 19). The Communal Table attracted a diverse and loyal group of participants.

 

Results: We distinguished four types of participants—lonely participants, activist participants, satisfied participants and calculating participants—whose pre-existing networks played a significant role in their individual needs for support and the outcomes of the intervention. Outcomes reported included experiences of conviviality and warmth, temporary relief of underlying problems and an overall positive opinion about the intervention, but network enlargement or increased societal participation were not reported.

 

Conclusions: Our findings suggest that social network interventions for people with MID should be tailored to participants’ pre-existing networks and related individual needs to be successful.

Including children with disabilities in preschool education. Experiences of Plan International Mozambique

PLAN INTERNATIONAL
August 2018

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Between 2015 and 2017, Plan International Mozambique worked together with communities supporting 106 preschools in rural Mozambique. In late 2016, an approach was piloted in 18 community-based preschools to support them to be disability-inclusive. The overall goal was to increase the number of children with disabilities enrolled in Early Childhood Care and Education (ECCE) centres delivering quality early learning opportunities. The pilot took place over a 12 month period. Summarised findings about the current status of inclusion in preschool programmes run by Plan International Mozambique, case studies and lessons learned about the inclusion of children with disabilities in these programmes are provided.  

 

They describe five aspects that need to be considered to remove barriers and ensure that children with disabilities can access and benefit from early childhood education:

1. Work directly with the parents of children with disabilities

2. Address individual physical and medical needs of children with disabilities

3. Build the skills and confidence of caretakers

4. Equip and build a strong implementing team

5. Build evidence on what is happening and what (doesn’t) work

Parental Perceptions, Attitudes and Involvement in Interventions for Autism Spectrum Disorders in Sarawak, Malaysia

TEO, Jing Xin
LAU, Bee Theng
2018

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Purpose: This study explores and compares perspectives of educators and parents regarding interventions used in managing Autism Spectrum Disorder (ASD) in Sarawak, Malaysia. Information on parental desires and limitations when selecting and maintaining management will aid in the development of strategies for ASD educators to work effectively with parents and caregivers, and vice versa.

 

Method: This qualitative research employed traditional question and answer interviews with 7 ASD educators and 30 parents. Interviews were semi-structured and questions were open-ended to allow for additional details to be relayed within the scope of the subject matter. Thematic analysis revealed overarching perceptions concerning parental attitudes towards involvement in their children’s interventions, and implications of cultural context.

 

Results: Perspectives were similar regarding the importance of confidentiality from educators and cultural factors playing a major role in content of intervention chosen by parents. Perspectives differed across four themes. Of significance was the way in which both samples viewed parental self-reliance in supplementing interventions and parental attitudes in effort and perseverance. 

 

Conclusion: Parental resources and culture influence ability and attitudes towards involvement. While educators may not agree on certain aspects, mutual appreciation of differing perspectives would benefit the children.

Prioritizing barriers and solutions to improve employment for persons with developmental disabilities

KHAYATZADEH,-MAHANI, Akram
WITTEVRONGEL, Krystle
NICHOLAS, David B
ZWICKER, Jennifer D
July 2018

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Purpose: Persons with a developmental disability have the lowest rate of labour force participation relative to other disabilities. The widening gap between the labour force participation of persons with versus without disability has been an enduring concern for many governments across the globe, which has led to policy initiatives such as labour market activation programs, welfare reforms, and equality laws. Despite these policies, persistently poor labour force participation rates for persons with developmental disabilities suggest that this population experiences pervasive barriers to participating in the labour force.

 

Materials and methods: In this study, a two-phase qualitative research design was used to systematically identify, explore and prioritize barriers to employment for persons with developmental disabilities, potential policy solutions and criteria for evaluating future policy initiatives. Incorporating diverse stakeholder perspectives, a Nominal Group Technique and a modified Delphi technique were used to collect and analyze data.

 

Results: Findings indicate that barriers to employment for persons with developmental disabilities are multi-factorial and policy solutions to address these barriers require stakeholder engagement and collaboration from multiple sectors.

 

Conclusions: Individual, environmental and societal factors all impact employment outcomes for persons with developmental disabilities. Policy and decision makers need to address barriers to employment for persons with developmental disabilities more holistically by designing policies considering employers and the workplace, persons with developmental disabilities and the broader society. Findings call for cross-sectoral collaboration using a Whole of Government approach.

Disability in humanitarian context: A case study from Iraq

HUMANITY & INCLUSION (HI)
June 2018

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This brief presents and addresses some of the challenges that prevent internally displaced persons with disabilities and other vulnerable population groups (elderly, injured persons, pregnant women, etc.) in camp settings from accessing humanitarian services in Iraq and impede on the development of an inclusive humanitarian response. Examples drawn from Handicap International’s experience working in Iraq with persons with disabilities and vulnerable population groups further illustrate those challenges. The recommendations to the humanitarian community provided in this brief aim at improving the protection of persons with disabilities and their inclusion in the humanitarian response

Exploring the links between water, sanitation and hygiene and disability; Results from a case-control study in Guatemala

KUPER, Hannah
et al
June 2018

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A case-control study was conducted, nested within a national survey. The study included 707 people with disabilities, and 465 age- and sex-matched controls without disabilities. Participants reported on WASH access at the household and individual level. A sub-set of 121 cases and 104 controls completed a newly designed, in-depth WASH questionnaire.

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