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Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use
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This research brief details the main ethical challenges and corresponding mitigation strategies identified in the literature with regard to the ethical involvement of children with disabilities in evidence generation activities. Evidence generation activities are defined as per the UNICEF Procedure for Ethical Standards in Research, Evaluation, Data Collection and Analysis (2015), as research, evaluation, data collection and analysis. The United Nations Convention on the Rights of the Child (art. 12) states that children have the right to form and express views freely in all matters affecting them and that the views of the child must be given due weight in accordance with her/his age and maturity.
The United Nations Convention on the Rights of Persons with Disabilities (art. 7) states that children with disabilities must enjoy human rights and freedoms on an equal basis with other children, and that they have a right to express their views freely and should be provided with assistance where necessary to realize that right. The two conventions in general, and these two articles specifically, frame this research brief, which aims to encourage practitioners to explicitly consider ethical ways to involve children with disabilities in evidence generation.
The findings detailed in this summary brief are based on a rapid review of 57 relevant papers identified through an online search using a systematic approach and consultation with experts. There was a paucity of evidence focusing specifically on the ethical challenges of involving children with disabilities in evidence generation activities. The evidence that did exist in this area was found to focus disproportionately on high-income countries, with low- and middle-income countries markedly under-represented.
Education for Every Ability. A review and roadmap of disability-inclusive education in East Asia and Pacific
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Rapid advances in education provision over the past few decades in East Asia and Pacific has led to considerable progress in integrating out-of-school children and adolescents in basic education. However, children with disabilities continue to face many barriers to accessing and completing quality primary education. While countries increasingly recognize the importance of making education systems more disability inclusive, many challenges remain to realising inclusive education for every child
The Education Section of UNICEF East Asia and Pacific Regional Office (EAPRO) commissioned a review of the progress of countries and UNICEF programmes in the region in advancing inclusive education for children, as part of its continued commitment to enabling equitable access to and participation of all learners in high quality and inclusive education. The mapping has a particular focus on programmes targeted for children with disabilities of pre-primary and primary school age, implemented from 2015 to 2019.
This Report analyzes successes, innovative approaches, challenges, gaps and priorities for action in the region and proposes a roadmap for advancing Inclusive Education in the region
Guidance Note 5: Return to School
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This guidance is part of a series to provide support during the Covid-19 crisis. The guidance notes include #1 Inclusive Digital learning, #2 Teacher resources, #3 Home support, #4 TV and Radio Learning, and #5 Return to School.
10 tips are provided for returning to school during and after the Covid-19 pandemic. Tips are given to cope with school re-opening, manage learning continuity with existing constraints and build better education systems.
Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation
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Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya.
Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status.
Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths–weaknesses–opportunities–threats to review the groups at the end of the 10-month set-up period.
Results: Recruitment resulted in registration of 254 participants to 18 groups – two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in ‘merry-go-round’ activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats.
Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership.
African Journal of Disability, Vol 9, 2020
Discussion about inclusive education considering IDA report "What an inclusive, equitable, quality education means to us" and Global Education Monitoring (GEM) report 2020
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A discussion of inclusive education based on Global Education Monitoring (GEM) report: "Inclusion and education: All means all. Global Education Monitoring (GEM) report 2020", published Jun 2020 and IDA report: "What an inclusive, equitable, quality education means to us", published Mar 2020.
Measuring treatment outcome in children with developmental coordination disorder; responsiveness of six outcome measures
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Purpose: Although measuring outcome of rehabilitation in children with Developmental Coordination Disorder is considered important no consensus exists on which instruments to use. An important attribute of a measurement instrument would be that it is sensitive to clinical changes. The aim of this prospective, observational study was therefore to investigate the responsiveness of six potentially suitable instruments.
Methods: Forty-one children (34 boys, median age 7.8 years, Inter Quartile Range: 7.2–9.2) receiving multidisciplinary rehabilitation treatment for Developmental Coordination Disorder were included (mean treatment time: 32.8 h, Standard Deviation 7.3). The following instruments were applied before and after rehabilitation: Movement-Assessment-Battery-Children-2 (MABC-2), Canadian Occupational Performance Measure (COPM), Systematic detection writing problems (SOS-2-NL), DCD-daily, Behaviour Rating Inventory of Executive Function (BRIEF), and TNO-AZL children’s Quality of Life questionnaire (TACQOL)). Change-scores (paired t-test/Wilcoxon-test) and responsiveness (Effect-sizes and Standardized-Response-Means) were calculated.
Results: Significant differences over time were found for the Canadian Occupational Performance Measure, DCDdaily and Movement-Asessment-Battery-Children-2 (p < 0.05). The responsiveness of these instruments was moderate-high (Canadian Occupational Performance Measure-performance Effect-Size:1.70/Standardized-Response-Mean:1.81, Canadian Occupational Performance Measure-satisfaction Effect-Size:1.65/Standardized-Response-Mean 1.53; DCDdaily-total-score Effect-Size:0.40/Standardized-Response-Mean:0.62, DCDdaily-Quality-score Effect-Size:0.74/Standardized-Response-Mean:0.89, DCDdaily-time-score Effect-Size:0.21/Standardized-Response-Mean:0.43; MABC-2-total-score Effect-Size:0.42/Standardized-Response-Mean:0.43, MABC-2-Ball-skills-score Effect-Size:0.33/Standardized-Response-Mean:0.36). Systematic detection of writing problems (SOS-2-NL), Behaviour Rating Inventory of Executive Function (BRIEF) and TNO-AZL children’s Quality of Life questionnaire (TACQOL) were not responsive to change.
Conclusion: Although the Movement-Assessment-Battery-Children-2 test is the most widely used instrument when measuring rehabilitation outcome in Developmental Coordination Disorder, the Canadian Occupational Performance Measure and DCDdaily seem to be more responsive and constitute a valuable addition.
Inclusion and education: All means all. Global Education Monitoring (GEM) report 2020
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The 2020 GEM Report assesses progress towards Sustainable Development Goal 4 (SDG 4) on education and its ten targets, as well as other related education targets in the SDG agenda. The Report also addresses inclusion in education, drawing attention to all those excluded from education, because of background or ability. The Report is motivated by the explicit reference to inclusion in the 2015 Incheon Declaration, and the call to ensure an inclusive and equitable quality education in the formulation of SDG 4, the global goal for education. It reminds us that, no matter what argument may be built to the contrary, we have a moral imperative to ensure every child has a right to an appropriate education of high quality.
The Report also explores the challenges holding us back from achieving this vision and demonstrates concrete policy examples from countries managing to tackle them with success. These include differing understandings of the word inclusion, lack of teacher support, absence of data on those excluded from education, inappropriate infrastructure, persistence of parallel systems and special schools, lack of political will and community support, untargeted finance, uncoordinated governance, multiple but inconsistent laws, and policies that are not being followed through.
Disability Inclusive Development - Kenya Situational Analysis
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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Kenya?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Kenya. It will be helpful for anyone interested in disability inclusion in Kenya, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.
Ensuring an inclusive return to school for children with disabilities
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This guidance has been produced by CBM Australia for UNICEF’s East Asia and the Pacific Regional Office and UNICEF Australia. The document is intended for UNICEF staff, education policy makers and planners in the East Asia and Pacific Region. Its purpose is to provide guidance on critical considerations and actions that should be undertaken to ensure an inclusive return to school for children with disabilities, as children return to school after the temporary closure of schools due to the COVID-19 pandemic.
‘Education for All’ under lockdown: the path ahead for inclusion of children with disabilities
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During the COVID-19 pandemic, schools around the world experience extraordinary times and as education moves online, those who have historically faced marginalisation find themselves facing new challenges to access education. The situation is disproportionately affecting those within marginalised communities in India and across the globe. In education, these disadvantages are amplified for learners with disabilities belonging to low socio-economic backgrounds. Lessons to be learned from schools that are incorporating the principles of inclusion and social justice while approaching these challenges are highlighted.
Pre-Primary and Primary Inclusive Education for Tanzania (PPPIET) – Foundation Phase : Report on Participatory Research to Inform Design of New Inclusive Education Model in Tanzania
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The Disability Inclusive Development (DID) consortium, a UK Department for International Development (DFID) funded initiative, is working together on the Pre-Primary and Primary Inclusive Education in Tanzania (PPPIET) programme whose ultimate goal is to foster quality sustainable inclusive education for all children with disabilities at scale across Tanzania in mainstream pre-primary and primary government schools. To achieve this, it aims to support collective, coordinated systems change by establishing an agreed common model of basic inclusive pre-primary and primary education in mainstream government schools, and galvanising significant progress in spreading its systematic implementation for all children with disabilities across Tanzania.
This task requires the cooperation of government, civil society and Disabled People’s Organisations (DPOs) to achieve real change. No single organisation or government department can achieve inclusive education on its own. Pooling the skills and resources and exchanging learnings to achieve quality inclusive education of children can help all involved. Working together will build collective commitment and action, not just amongst DID consortium members but also across government, donors, education actors and the private sector.
Part of this process was to conduct a participatory field research to gather evidence on the current provision of support services needed for inclusive education and identify gaps that need to be filled in the future. The exercise also served to identify key challenges that need addressing to facilitate the removal of legal, policy, systemic, physical, communication and language, social, financial and attitudinal barriers. The findings from the research were intended to identify the priority components that need addressing in the design of an inclusive education design model and the drivers of accountability, i.e. the agencies/stakeholders responsible for implementing the required system changes.
Summary of key findings
The Government of Tanzania has continually demonstrated its support and commitment to inclusive education evidenced by the many comprehensive policies for inclusive education, including the National Inclusive Education Strategy (NSIE) 2018 – 2021. Through these policies, it is actively working to improve the educational environment but the journey is long and requires significant system changes for the policies to be effectively implemented, which needs collaboration, cooperation, planning, and strategic resourcing across multiple ministries, NGOs, DPOs, and the private sector.
To achieve inclusive education, a rights-based approach to education needs to be adopted, focusing on identifying and removing the barriers to access and quality learning for every child, including appropriate infrastructure changes in schools, changing attitudes, and providing additional support to girls and boys with disabilities through learning support assistants. There also needs to be a fundamental shift towards child-centred pedagogy in teacher training and curriculum development to meet the needs of all learners, including having a mandatory module on inclusive education in all teacher training curricula. Over time, this will help develop teachers’ confidence and positive attitudes towards teaching children with disabilities and achieve impact at scale. Strengthening the capacities of all teachers, improving classroom management, increasing awareness about inclusive education for all stakeholders, and improving access to screening and early identification, health, rehabilitation services, and affordable assistive devices are all contributing factors to achieving inclusive education in Tanzania.
Systems change to improve learning and support for children with disabilities takes time and requires a significant investment of resources and budget allocation by government and service providers. However, inclusive education can be cost-effective compared with the cost of segregation and special schools, particularly where ministries work together to ensure a more ‘strategic allocation of existing funds, promoting universal design and co-operation agreements among multiple ministries’. Developing partnerships with the private sector to improve the physical infrastructure of schools and access to affordable assistive devices can also help reduce the cost of inclusion.
Inclusive education is a cross-cutting issue that requires the commitment and accountability of multiple stakeholders across government ministries to ensure its effective implementation. This includes the MOEST, MOHCDGEC, MOFP, the Prime Minister’s Office (PMO) and the President's Office, Regional Administration and Local Government (PORALG).
It is anticipated that to achieve successful implementation and scaling up of the model design for inclusive education, there will need to be a systematic and phased approach to implementing the recommendations in this report over the short, medium and long term. It is acknowledged that this process will take considerable time to implement and can only be successfully achieved over a period of years with the support and increased understanding of all stakeholders. There is no quick-fix solution to inclusive education. It requires changing long-established systems and adjusting services, including health and education, training, and attitudes. There is also no financial short cut.
However, while some recommendations require significant investment, others can be achieved in the current context without significant monetary investment. For example, changing the curriculum for all teacher training to ensure inclusive education is included as a standard module will help transform the approach of teachers and the inclusion of children with disabilities in learning. Raising awareness of inclusive education for all stakeholders, including policy-makers and implementers will also help increase understanding of the long-term system changes required and reduce stigma and discrimination. Inclusive education can only be achieved in an inclusive society and it needs collective effort from the government, parents, community, and all stakeholders for effective implementation.
Guidance Note 4, TV and Radio Learning
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This guidance is part of a series to provide support during the Covid-19 crisis. The guidance notes include #1- Inclusive Digital learning #2 - Teacher resources and #3 Home support. #4 TV and Radio Learning #5Return to school.
A pictorial based summary of the top 10 tips is provided followed by explanation of the resources and more information about top tips, with hyperlinks of relevant resources.
Parental perspectives on care for sleep in children with cerebral palsy: a wake-up call
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Purpose: Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1–8 years) with CP.
Materials and methods: Individual, semi-structured interviews were conducted with eighteen parents of a child with CP (GMFCS levels I-V). Inductive thematic analysis of the data was performed within each of the three preidentified domains: 1) Current situation; 2) Concerns; 3) Needs.
Results: In total, sixteen themes were identified across the three domains. Within the families’ Current situation, parents expressed various issues concerning the care for sleep of their child both at night and during daytime, which are hampered by perceived deficiencies in healthcare, such as limited attention for sleep and lack of knowledge among health professionals. Themes within the Concerns and Needs domains encompassed experiences in the home environment relating to child, family and social aspects, while experiences in the healthcare setting included clinical practices and attitudes of healthcare professionals, as well as the broader organisation of care for sleep.
Conclusions: Parents face numerous challenges caring for their child’s sleep and the burden placed on families by sleep problems is underappreciated. In order to break the vicious circle of sleep problems and their disastrous consequences on the wellbeing of families, we need to wake up to parent-identified issues and shortcomings in healthcare. Care for sleep should be integrated into paediatric rehabilitation through routine inquiries, using a family-centered and multidisciplinary approach.
Technical Note: Protection of Children during the Coronavirus Pandemic (Version 2)
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The aim of this brief is to support child protection practitioners and policy makers in putting the child’s safety and well-being at the centre of their COVID-19 pandemic response
Inclusion in remote teaching contexts
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Remote learning can be difficult for everyone, but it can be especially difficult for vulnerable communities. This guide describes the ways that access and engagement can be blocked in remote learning and suggests practical ideas to increase learning opportunities for all.
Disability Inclusion Helpdesk Report No: 38 : Disability and Child Marriage
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Summaries on the findings from the following queries:
Is there evidence that suggests children with disabilities are more/less vulnerable to child marriage than children without disabilities? If yes, what are the driving factors for this?
What are some of the evidence-based interventions we could think about to ensure that children with disabilities affected by child marriage are not left behind? How can we better mainstream disability inclusion in the programme?
The impact of an inclusive education intervention on learning outcomes for girls with disabilities within a resource-poor setting
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Background: Despite a global commitment to the right to education for persons with disabilities, little is known about how to achieve inclusive education in practice, particularly in low- and middle-income countries (LMICs), where the majority of the world’s people with disabilities reside. Moreover, although exclusion from education is magnified by intersecting gender and socioeconomic inequalities, there is especially little knowledge regarding what approaches to inclusive education are effective amongst girls with disabilities living in resource-poor settings.
Objectives: The objective of this article was to assess the impact of an inclusive education intervention led by a non-governmental organisation (NGO) on the educational attainment of girls with disabilities in the resource-poor Lakes region of Kenya.
Method: A quasi-experimental design was employed, where the literacy and numeracy educational attainment of the intervention and control groups was compared over two time points a year apart (Time 1 and Time 2; total matched N = 353). During this period, activities pertaining to six core components of a holistic inclusive education model were implemented.
Results: Relative to the control group, girls with disabilities in the intervention group reported a greater increase in literacy and numeracy attainment, adjusted for grade and level of functional difficulty.
Conclusion: Findings suggest that the intervention was successful in engendering additional improvements in the educational attainment of girls with disabilities from the resource-poor Lakes region of Kenya. Results highlight both the applicability of NGO-led interventions in settings, where national implementation of inclusive education is constrained, and the potential of taking such interventions to scale.
African Journal of Disability, Vol 9, 2020
Delivering trauma and rehabilitation interventions to women and children in conflict settings: a systematic review
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In recent years, more than 120 million people each year have needed urgent humanitarian assistance and protection. Armed conflict has profoundly negative consequences in communities. Destruction of civilian infrastructure impacts access to basic health services and complicates widespread emergency responses. The number of conflicts occurring is increasing, lasting longer and affecting more people today than a decade ago. The number of children living in conflict zones has been steadily increasing since the year 2000, increasing the need for health services and resources. This review systematically synthesised the indexed and grey literature reporting on the delivery of trauma and rehabilitation interventions for conflict-affected populations.
A systematic search of literature published from 1 January 1990 to 31 March 2018 was conducted across several databases. Eligible publications reported on women and children in low and middle-income countries. Included publications provided information on the delivery of interventions for trauma, sustained injuries or rehabilitation in conflict-affected populations. A total of 81 publications met the inclusion criteria, and were included in the review.
BMJ Global Health 2020;5:e001980
http://dx.doi.org/10.1136/bmjgh-2019-001980
Interventions for anxiety in mainstream school-aged children with autism spectrum disorder (ASD)
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Anxiety is a common problem in school-aged children with autism spectrum disorder (ASD). Cognitive behavioural therapy (CBT) and other psychosocial interventions have been developed as alternatives to pharmacological intervention to treat anxiety in students with ASD.
This Campbell systematic review examines the effects of interventions for reducing anxiety in school-aged children with autism spectrum disorder, compared to treatment-as-usual. The review summarises evidence from 24 studies using an experimental or quasi-experimental design.
Twenty-four studies, involving 931 school-aged children with ASD (without co-occurring intellectual disability) and clinical anxiety, are summarised in this review. The studies were experimental or quasi-experimental control-treatment trials, deemed to be of sufficient methodological quality and with reduced risk of bias. Studies spanned the period 2005 to 2018 and were mostly carried out in Australia, the UK and the USA.
Examined interventions ranged across clinical, school-based, or home-based settings, with group or individual treatment formats. Twenty-two of the studies used a CBT intervention. One study used peer-mediated theatre therapy and one study examined the benefits of Thai traditional massage for reducing anxiety. Most interventions involved parents/caregivers and were conducted face-to-face.
Campbell Systematic Reviews, Volume16, Issue2, June 2020, e1086
https://doi.org/10.1002/cl2.1086
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