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Tikule limodzi: Let’s grow together. The impact caregiver training has on children with disabilities in Malawi - Baseline report

MURPHY, Rachel
et al
December 2017

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Tikule Limodzi (‘Let’s Grow Together’) was a three-year (2015 to 2018) multi-agency study that sought to promote the inclusion of children with disabilities in community-based childcare centres (CBBCs) in a rural district of Southern Malawi. The main purpose of the project was to explore ways of developing the skills of caregivers to support children with disabilities in CBCCs through the use of inclusive strategies and resources. This mixed-method study also sought to share evidence that will aid the Malawi government and other stakeholders to better understand the complex dynamics that ‘enable’ or ‘inhibit’ quality early childhood development (ECD) for children with disabilities. 

This report presents the baseline pre-intervention data from a cluster-randomised controlled trial (CRCT) of a caregiver training intervention targeting CBCCs in Thyolo district in the Southern Region of Malawi. The trial involved 48 CBCCs randomly allocated to the control and intervention arms (24 CBCCs each). The training (intervention) consisted of a two-week training programme based on the basic National ECD Caregiver Training Programme, with additional modules on how to improve the inclusion and participation of children with disabilities in CBCCs. The baseline data was collected between December 2016 and May 2017. The aim of the trial was to measure changes in child development outcomes (equal to actual age), school readiness, caregiver satisfaction and motivation, changes in CBBC environment and routine and structure, as well as caregiver retention.

Everybody Matters: Good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

Van SLOBBE, Caroline
November 2017

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This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

Stigma, disability and development

BOND DISABILITY AND DEVELOPMENT (DDG)
November 2017

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This briefing considers how stigma affects people with disabilities and why challenging stigma is a critical issue for development.

 

Examples of successful efforts by UK non-governmental organisations (NGOs) to reduce and eliminate stigma are briefly outlined including: self help groups; alliances between groups (including DPOs); staff training; skills training and wider awareness raising.

Cross-sectional Survey to Assess Prevalence of Disability and Access to Services in Albay Province, The Philippines

HODGE, Marcus
BOLINAS, Amable
JAUCIAN, Erlynn
BONEO, Rebecca
SCHAPIRA, Allan
VILLANUEVA, Mary Mediatrix V
2017

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Aim:  A cluster randomized cross-sectional survey to assess the prevalence of disability and access to support services was conducted in Albay Province, the Philippines in April 2016.

 

Method:  The population-based survey methodologies developed by the Washington Group of the United Nations Statistical Commission and UNICEF were utilized.  A sample of 70 barangays (the 3rd level administrative division in the Philippines) was selected as clusters, with probability proportional to size, and 30 households were selected randomly in each barangay to be surveyed.

 

Results:  The estimated prevalence of disability using the standard criteria of the Washington Group and UNICEF among children (2-17 years old) was 2.0% and for adults (≥18 years old) it was 6.5%.  The estimated prevalence of disability was higher in rural than in urban areas.  Deficiencies in the performance of existing services were identified; access by children with disabilities to support services was lowest in rural highland and rural plain barangays.

 

Conclusions: There was a large unmet demand for support services addressing the needs of persons with disabilities in Albay Province, especially in rural highland areas.  Persons with disabilities were disadvantaged in access to education and employment; many had not been educated in their basic rights.

 

Implications:  To identify, educate and fully support persons with disabilities, community-based rehabilitation (CBR), health and other rehabilitation services must communicate effectively with each other, their current work should be mapped and analysed, their comparative strengths identified, and their future work coordinated.  It is a priority to educate persons with disabilities and their families about their rights, and facilitate their access to support services; this requires increased investment in communication targeting persons with disabilities and the communities, especially rural.  Providers caring for persons with disabilities need to work in partnership to identify unreached persons with disabilities.  Prevalence surveys, with stronger focus on the profiles and performance of CBR and related services, would add to the evidence-base to improve the quality and coverage of services for persons with disabilities.

Online Parent Training: A Pilot Programme for Children with Autism and Neurodevelopmental Disabilities in Bangladesh

KARR, Valerie
BRUSEGAARD, Callie
KOLY, Kamrun Nahar
VAN EDEMA, Ashley
NAHEED, Aliya
2017

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Purpose: This study aimed to assess the implementation of an online parent training programme in Bangladesh, designed to enhance parental knowledge of autism and neurodevelopmental disorders and related interventions. In addition, study participants were expected to become “Master Trainers” with the intention of training other parents in their local communities.

 

Method: This survey study assessed parental knowledge and programme effectiveness, such as potential online learning barriers, cultural sensitivities, and general course content feedback after each unit.

 

Results: The programme had an 81% completion rate (with parents completing all but one unit) with an average programme knowledge score of 86%. Parents felt that the course content was moderately difficult, the length of the units was appropriate, and the units were culturally sensitive. They requested more detailed lessons, specific case studies, and adaptation of the curriculum for older children.

 

Conclusion: The pilot programme merits the next phase of development, which includes local adaptation and translation. However, the findings are limited by the small sample size.

Disability inclusion and the sustainable development goals : practices and challenges

AL-GHAIB, Ola Abu
WILM, Susanne
October 2017

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This research was commissioned on the occasion of the 2017 High-level Political Forum (HLPF) in New York to investigate how far the global commitment to disability has translated into implementation, monitoring and reporting processes at national and sub-national level. Four case studies were commissioned, exploring the extent of disability inclusion in alignment with the SDGs in Bangladesh, Kenya, Sierra Leone and Zambia. DPOs played a pivotal role in the research, with more than 40 DPOs consulted through key informant interviews and focus group discussions. In Zambia, the research was implemented by a local DPO – the Zambia Federation of Disability Organisations (ZAFOD). A literature review identified internet-based policy, legal and strategic documents related to disability and the 2030 Agenda, as well as documentation and reports on different SDG nationalisation initiatives.

 

 

Disability, health and human development

MITRA, Sophie
October 2017

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This book presents new research on disability, health, and wellbeing in four countries (Ethiopia, Malawi, Tanzania and Uganda) . The primary focus is empirical. It also makes a conceptual contribution as it presents a new model of disability based on the human development and capability approach. It addresses four questions: 

  • How should disability be defined to analyse and inform policies related to wellbeing?
  • What is the prevalence of functional difficulties?
  • What inequalities are associated with functional difficulties?
  • What are the economic consequences of functional difficulties? 

Detailed data analysis using large-scale household survey datasets is combined with an interactional model of disability based on Amartya Sen’s capability approach.

 

DOI 10.1057/978-1-137-53638-9

 

First of book series: the Palgrave Studies in Disability and International Development

New sign language new(S): the globalization of sign language in the smartphone era

TANNENBAUM-BARUCHI, Caroline
FEDER-BUBIS, Paula
October 2017

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"Languages are dynamic and change over the years. Changes in sign languages have been usually initiated to accommodate the needs of the local Deaf community. With the increase in smartphone use, sign languages are influenced not only by the local Deaf community, but also by foreign Deaf people on the other side of the screen, regardless of their location. Smartphones influence the sign language itself and the Deaf community by connecting different communities of Deaf people through messages, shared information and experiences, and news delivery. The popularity of this technology among Deaf communities is a social phenomenon emerging from Deaf people themselves. Smartphones may promote the globalization of sign language, shortening distances between Deaf communities around the world"

Disability & Society, Volume 33, 2018 - Issue 2

Psychological well-being of adolescents with physical disabilities in Zimbabwean inclusive community settings: An exploratory study

MPOFU, Jabulani
SEFOTHO, Maximus M.
MAREE, Jacobus G.
2017

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Background: The purpose of this study was to explore the psychological well-being of adolescents with physical disabilities living in inclusive community settings of Makonde Urban in Zimbabwe. An inclusive community is one that aims to remove exclusionary practices within the community and promote community systems that accept all people irrespective of their difference. Inclusive communities on their own are not uniquely designed for people with disabilities, but most developing countries have adopted them as a basic strategy to influence and enhance psychological well-being of people with disabilities.


Methods: A constructivist lived experience perspective underpinned this research, in which multiple case studies were used to interact with the participants on inclusion and psychological well-being of adolescents with physical disabilities. Purposive sampling was used to select 14 participants (9 males and 5 females). Data were collected through face-to-face interviews and transcribed verbatim. Four themes emerged from the thematic analysis of data sources.


Results: It was found that participants who were adolescents with physical disabilities living in inclusive community settings of Makonde Urban in Zimbabwe were having high levels of autonomy and choice, purpose in life, positive relations with others and good personal growth and self-acceptance.


Conclusion: The findings of this study should enable inclusive communities’ policy-makers and researchers to better understand the psychological well-being of adolescents with physical disabilities living in inclusive communities.

Towards Inclusion - A guide for organisations and practitioners

VAN EK, Vera
SCHOT, Sander
2017

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This guide is the result of collaboration between Light for the World (LFTW), Mission East (ME), and ICCO Cooperation.

Based on decades of experience of working with the most marginalized and excluded communities, the three organizations cooperated to record their experiences in a publication which can be used in a variety of relief and development contexts. ‘Towards Inclusion’ is designed to be an easy to use reference for organizational and program/project development with a focus on gender responsiveness and disability inclusion.

The guide is made up of three parts:
• the first part guides users through the process of organizational self-assessment to determine readiness to change and identify key steps towards becoming a more inclusive organization.
• the second part introduces the ACAP framework, as a means of improving inclusion in programming via Access, Communication, Attitude and Participation. A range of tools for measuring and improving inclusion at all stages of the project cycle are provided.
• the third part provides guidelines for the people or ‘change facilitators’ who will guide organizations through the process of change towards becoming more inclusive.

The publication can be found at “Towards Inclusion Guide” and the accessible version of the publication can be downloaded. Both are free of charge.

Possibilities for organisation trainings and/or webinars on the practical application of the guide are under consideration. Contact ACAP@gmail.com.

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Balaynesh
et al
September 2017

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Ethiopian disabled women’s experiences of intimacy, pregnancy and motherhood are reported. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants. Interview data revealed that mothers experienced significant challenges with regard to accessibility of health centers, physician’s lack of knowledge about and problematic attitudes toward them and more general societal prejudices towards individuals with disability. The 13 participants were employed women with physical or visual disabilities, and the interviewees were from the Addis Ababa metropolitan area, Ethiopia.

 

Disability & Society, 32:10, 1510-1533

DOI: 10.1080/09687599.2017.1361385

Deaf education development programme. Young people’s consultation, Tanzania, August 2017

COWAN, Jo
September 2017

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In partnership with Deaf Child Worldwide, Childreach Tanzania delivered the Deaf Education and Development Programme (DEDP) from June 2014 to June 2017 in the Kilimanjaro Region of Tanzania. The DEDP improved the quality of life of deaf young people by:

› increasing enrolment and retention of young people in training centres

› improving sign language proficiency and communication between deaf young people and key stakeholders in their lives

› connecting deaf youth to internships and other business opportunities to support them to earn a living.

However, the DEDP highlighted many examples of deaf young people developing vocational skills, but still failing to transition from secondary school or vocational training centres into work. Phase two of this project will focus on youth employment, livelihoods and transition from school to independent living.

 

This report summarises consultation activities held with deaf young people during August 2017. The consultation explored their knowledge of the challenges they face when leaving school and their experiences of accessing information and support to help them transition to an independent life. The findings of this consultation have been hugely influential in the proposed project design for phase two. The consultation was a three-day workshop held at a community-based hub hosting a different group of young people each day. Group 1 – Young people who have left school. Group 2 – Moshi Technical School students (secondary school). Group 3 – Ghona Vocational Training Centre students

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Belaynesh
VAN ENGEN, Marloes
VAN DER KLINK, Jac
SCHIPPERS, Alice
2017

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This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.

Community health workers lensed through a South African backdrop of two peri-urban communities in KwaZulu-Natal

WHITE, Meghan S.
GOVENDER, Pragashnie
LISTER, Helga E.
2017

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Background: As the South African government re-engineers primary healthcare (PHC), the need for additional information on stakeholders involved in the process has emerged. Of these are community health workers (CHWs), who have been identified as central to PHC success.


Objectives: To profile the current CHWs within KwaDabeka and Clermont in KwaZulu-Natal, to describe their roles and to explore the barriers and enablers influencing their service delivery.


Method: A convergent mixed methods design was employed with a sample of CHWs with the use of a survey (n = 53) and two focus groups (n = 10) and semi-structured interviews with four ward councillors (n = 4). Data were analysed statistically and thematically.


Results: The profile of CHWs reflected only women with a mixed age range and a majority of 59% who had not completed formal schooling. General work experience as a CHW varied. There were diverse opinions expressed towards the CHW role which related to their job title and identity, supervision, remuneration, growth pathways and psychological and emotional issues. Whilst the National Community Health Worker Profile Framework was established for the CHW programme, there are several factors lacking in the current CHW programme such as a formal growth pathway or formal training to align the CHWs with the National Qualifications Framework.


Conclusion: The study findings are essential for the monitoring and evaluation as well as development and refinement of policies that will assist in ensuring adequate rollout of PHC with CHWs.

Teachers’ Perceptions of Disabilities on the Island of Roatán, Honduras

SCHNEIDER, Cornelia
2017

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Purpose: Roatán, a small island in Honduras, is home to six ethnic groups. Due to financial constraints, many children have limited access to schooling. This article is a study on teachers’ perceptions of disabilities and students with disabilities and inclusive education on the island.

 

Method: Twenty seven teachers working in public and private schools, and schools funded by the World Bank, were interviewed in March-April of 2014 in order to explore cultural and social representations of disabilities on the island.

 

Results: The findings show that many of the teachers’ representations can be analysed under the lens of different models of disability - the medical model, the social model, and a religious-moral model. Inclusive education is perceived less as a means of including children with disabilities in the regular classroom, and more as a method of creating institutions to take care of their needs.

 

Conclusion: There is a strong intersection of poverty, post-colonialism and disability which makes working under an inclusive lens very difficult for teachers. The cultural norms influence ideas of normalcy and disabilities, and the blame is on parents for having children with disabilities.

Access to Services and Barriers faced by People with Disabilities: A Quantitative Survey

GRILLS, Nathan
SINGH, Lawrence
PANT, Hira
VARGHESE, Jubin
MURTHY, GVS
HOQ, Monsurul
MARELLA, Manjula
2017

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Purpose: In low- and middle-income countries, reliable and disaggregated disability data on prevalence, participation and barriers is often not available. This study aimed to estimate disability prevalence, determine associated socio-demographic factors and compare access in the community between people with and without disability in Dehradun district of Uttarakhand, India, using the Rapid Assessment of Disability Survey.

 

Methods: A cross-sectional population-based survey was conducted on a sample of 2431 adults, selected using a two-stage cluster randomised sampling technique. The survey comprised an interviewer-administered household survey and an individual survey measuring disability, wellbeing and participation.  For each person with disability, an age and sex-matched control (without disability) was selected. In addition to prevalence, the difference in participation and barriers faced by people with and without disability were analysed.

 

Results and Conclusions: The prevalence of disability was 6.8% (95% CI 5.8-7.8) with significant associations with age, sex, economic status, education and employment. Psychosocial distress (4.8%) and mobility impairment (2.7%) were the most common disabilities identified. The study showed that people with disabilities had significantly less access to services than those without disability, and the barriers reported most often were lack of information, transport and physical inaccessibility.

Parent Empowerment in Early Intervention Programmes of Children with Hearing Loss in Mumbai, India

KULKARNI, Kasturi Arun
GATHOO, Varsha Shrikant
2017

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Purpose: Since families are perceived to be active agents in the early intervention programmes of young children with disabilities, professionals ought to treat parents as equal partners and keep them informed and involved in various aspects of the intervention.  This study aimed to explore the areas in which parent empowerment is currently being facilitated in the early intervention centres for children with hearing loss.

 

Method: A qualitative research with conversational analysis was the approach used. Focus group discussions with the two primary stakeholders, namely parents and special educators, were held separately at five sites in Mumbai, to gather their views on the existing areas of empowerment. It was also decided to explore the felt needs of parents in this regard. Person triangulation was used to ascertain the credibility of the data.

 

Results: Conversational analysis yielded 4 themes with respect to parents: Parental knowledge, involvement, support and needs. 

 

Conclusion and Implications: The study highlighted the gaps in parent empowerment in the programmes undertaken by early intervention centres.  A recommendation is made to develop a common framework for empowering parents. It is envisaged that such a framework will bridge the gap between what currently exists for parents, their felt needs, and current global practices.  This framework could also assist in measuring family empowerment outcomes.

Positive and Negative Impacts on Caregivers of Children with Intellectual Disability in India

ADITHYAN, G S
SIVAKAMI, M
JACOB, John
2017

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Purpose: The factor integral to the empowerment of children with intellectual disability is the presence and active involvement of support mechanisms such as their family and their caregivers. This study assesses both positive and negative impacts on parents/caregivers of children with intellectual disability in Oddanchatram block of Dindigul District in Tamil Nadu, India.

 

Method: Mixed method techniques (quantitative and qualitative) were used.

 

Results: Although many disturbing realities in the family situation were revealed, there were also positive impacts which were a hopeful sign.

 

Conclusion: Empowering the caregivers of children with intellectual disability is the first step towards inclusion of these special children in society. Various strategies to achieve this goal are discussed in the study. 

Effect of Multidisciplinary Intervention on Clinical Outcomes of Children with Autism Spectrum Disorder in Mumbai, India

DALWAI, S H
MODAK, D K
BONDRE, A P
ANSARI, S
SIDDIQUI, D
GAJRIA, D
2017

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Purpose: To analyse clinical outcomes in terms of functional changes in children with Autism Spectrum Disorder (ASD), before and after receiving a multidisciplinary developmental intervention programme.

 

Methods: Structured goal-oriented multidisciplinary intervention, individualised to each child, was implemented through 5 child development centres in Mumbai, India, in 2014-2015. Secondary data analysis of 38 children diagnosed with ASD, in the age group of 2.1 - 6.1 years, was conducted. All children received occupational therapy and speech therapy, and parental counselling was also done. The average number of intervention sessions were 48-72 for occupational therapy (twice or thrice a week), 24-48 for speech therapy (once or twice a week) and 5-6 for parental counselling (once a month). Childhood Autism Rating Scale (CARS) and Vineland Social Maturity Scale (VSMS) were used for assessment, before and after intervention.

 

Results: Mean positive difference in CARS total scores through paired t-test was 4.18 (p < 0.0001). Significant positive changes in functional ability were observed in most of the sub-scales (relating to people; object use; visual response; verbal and non-verbal communication; taste, smell and touch response and use; level and consistency of intellectual response and general impression). Paired t-test also showed significant positive changes on all VSMS sub-scales, exceptSocialisation.

 

Conclusions: The model used in this multidisciplinary intervention, and adherence to its protocols, has the potential to improve functional ability (or the child’s adaptation to his/her condition) in children with ASD, in a region with limited awareness of developmental disabilities.

 

Limitations: Separate effects of factors outside the intervention could not be tested due to inadequate sample sizes for sub-analyses. Results also need to be validated by tests that do not depend on parental reporting (e.g., CARS and VSMS) but assess the performance of the child instead.

Including children with disabilities in humanitarian action

UNICEF
July 2017

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"The purpose of Including Children with Disabilities in Humanitarian Action is to strengthen the inclusion of children and women with disabilities, and their families, in emergency preparedness, response and early recovery, and recovery and reconstruction. This series of booklets provides insight into the situation of children with disabilities in humanitarian contexts, highlights the ways in which they are excluded from humanitarian action, and offers practical actions and tips to better include children and adolescents with disabilities in all stages of humanitarian action. The booklets were created in response to UNICEF colleagues in the field expressing a need for a practical resource to guide their work. The information and recommendations are based on evidence and good practices gathered from literature and field staff experiences. The six booklets on how to include children and adolescents with disabilities in humanitarian programmes are as follows: 1) general guidance; 2) child protection; 3) education; 4) health and HIV/AIDS; 5) nutrition; 6) water, sanitation and hygiene (WASH)".

General guidance available July 2017. Others to follow.

In addition to the PDF versions in English, Arabic and French, the guidance is also available in a range of accessible formats, including EPUB, a Braille-ready file and accessible HTML formats. 

The guidance was developed in collaboration with Handicap International.

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