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Combatting the costs of exclusion for children with disabilities and their families
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Compared with other children, children with disabilities are less likely to receive an education, less likely to be employed as adults, more likely to be victims of violence, less likely to start their own families and participate in community events, and more likely to live in poverty.
The exclusion of children with disabilities affects not only them, but imposes costs on the whole community. If these children lack the opportunity to be productive, society loses out on what they could have produced. The barriers faced by people with disabilities can also create more responsibilities for their family members, which can limit their opportunities to work or get an education.
Moreover, the impact of exclusion extends beyond the economic cost. If people with disabilities are absent from public discourse, the community cannot benefit from their ideas. If they are excluded from political participation, the government cannot truly represent the interests of all citizens.
A growing body of research suggests that the costs of exclusion are high. Fortunately, evidence also demonstrates that there are effective ways to ameliorate these costs. A strong case can be made for the social and economic benefits of inclusion. This paper is an effort to begin making that case.
Academic Outcomes and Coping Mechanisms of Children using Cochlear Implants in Mainstream Schools in Kerala, India
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Purpose: The aim of the present study was to understand the academic outcomes of children using cochlear implants in mainstream schools in Kerala, India and to explore the compensatory strategies used by them to overcome the difficultiesfaced in classrooms.
Method: Thirty-one children using cochlear implants who were attending first and second grades in mainstream schools, and their parents and teachers participated in the study. Teachers were asked to rate a questionnaire, “Teachers’ Perceptions of Academic Outcomes”, which consisted of five sections – oral comprehension, oral expression, reading, writing and mathematics. The performance of the children using cochlear implants was compared with the performance of typically hearing children in the class. The grades obtained in the previous examination were also used for the comparison. Information was collected regarding difficulties faced by the children inside the classroom and their strategies to overcome the challenges.
Results: The class teachers rated the performance of 71 % of these children as ‘above average’. Though the academic outcomes were found to be good on the questionnaire and classroom tests, most of the children with cochlear implantsfaced various difficulties and had used different compensatory strategies to give their optimum performance in the classroom.
Conclusion: The study emphasizes the importance of having mid- and long-term follow-ups with children using cochlear implants, even after mainstreaming. It is necessary to orient and train teachers about the needs of these children and to implement support strategies in mainstream schools.
Kindergarten Redshirting: Implications for Children with Disabilities
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The purpose of this paper is to explore issues and concerns related to academic redshirting in kindergarten and to discuss implications of this practice for children with disabilities. Although parents cite a variety of reasons for redshirting their child, only limited evidence of academic or social benefit can be found. A search was conducted to identify studies relevant to academic redshirting and inclusive of children with disabilities published within the past 20 years, and 17 articles were identified related to the topic. From these articles, three central topics emerged: (a) prevalence, predictors, or parent motivations for kindergarten redshirting, (b) the impact of redshirting on academic achievement and post-secondary outcomes, and (c) the impact of this practice on a child’s behavior. While assumptions can be made based on the research conducted using a general education population, the impact of kindergarten redshirting on the success of children with disabilities is unclear due to the limited amount of research that currently exists. Implications for children with disabilities are discussed.
Altered cervical posture kinematics imposed by heavy school backpack loading: A literature synopsis (2009–2019)
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Background: Habitual school backpack carriage causes neuro-musculoskeletal vertebral, shoulder and hand pain; deviated posture compromised cardiopulmonary function and proprioception.
Objective: Present a novel literature summary of the influence of backpack carriage associated with deviated cervical posture and compromised pulmonary function.
Method: An electronic literature appraisal adopting the Preferred Reporting Items for Systematic Reviews, using Google Scholar, Science Direct, EMBASE, AMED, OVID, PubMed and Sabinet search engines, was instituted during 2009–2019. Key search words: schoolbag, backpack, carriage, cervical posture and children. The quality of the studies was assessed using the Downs and Black Appraisal Scale.
Results: 583 records were initially identified which was reduced to 14 experimental and observational studies. A total of 1061 participants were included across the 14 studies, with an average age of 11.5 ± 1.3 years, body mass of 37.8 ± 6.6 kilograms (kg), height of 1.41 ± 0.05 meters (m), backpack mass of 5.2 ± 0.9 kg and percentage backpack mass to child’s body mass of 13.75%. The studies mean rating according to the Downs and Black Appraisal Scale was 76.3%. The average craniovertebral angle (CVA) was 53.9° ± 14.6° whilst standing without carrying a backpack was reduced to 50.4° ± 16.4° when loaded (p < 0.05). Backpack loads carried varied from 5% – 30% of the participant’s body mass that produced a mean CVA decline of 3.5°.
Conclusion: Backpack carriage alters cervical posture, resulting in smaller CVA and compromised pulmonary function. There is no consensus of the precise backpack mass that initiates postural changes. Girls’ posture begin changes when carrying lighter backpacks as compared to boys of the same age strata.
Let’s break silos now! Achieving disability-inclusive education in a post-COVID world
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Children with disabilities face multiple obstacles to access and thrive in education. In low- and middle-income countries, 50% of children with disabilities are out of school. More than 40% of countries in the regions of Asia, Latin America and the Caribbean still lean towards segregated education systems. Obstacles for the education of children with disabilities exist both within and outside the education system. The COVID-19 pandemic has further exacerbated inequalities in education. In times of crisis, coordinated multi-sectoral approaches are even more important to address the complexity and interdependency of children’s care, safety, wellbeing and education.
The extensive experience of Humanity & Inclusion and its partners across the 27 countries where they implement Inclusive education projects was crucial to develop this report and to nourish it with first-hand expertise and evidence. The Report contains arguments, testimonies, case-studies, and a list of actionable recommendations for governments in low and middle income countries, aid donors, and multilateral agencies
Unheard children. Championing deaf children’s rights to family, community, education and independence in developing countries
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This report highlights the specific barriers facing deaf children and young people and demonstrates a number of smallscale approaches and initiatives that have succeeded in breaking down some of these barriers.
Topics are:
- Language and communication. Early diagnosis and support (example from Bangladesh). Effective and affordable hearing technology. Communication choices. What is sign language? Tanzanian Sign Language – the need for more interpreters
- Families. Early diagnosis and support. Upskilling parents and primary caregivers. Power to the parents (example from Uganda). Catalyst for change (example from India).
- Communities. Deaf role models (example from Bangladesh). Challenging the public and professionals. Educating the police force (example from India). Sharing knowledge across organisations
- Education. Intensive communication. Extra help in the classroom (example from Kenya). Making secondary education accessible. Developing sign language skills. Inclusive further and higher education
- Independence. Listening to deaf young people. Involving deaf young people in research. Support to make informed choices. Challenging perceptions in the workplace (example from Kenya)
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.
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.
A preschool for all children? – Swedish preschool teachers’ perspective on inclusion
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Building on the Salamanca Statement from 1994, the United Nations Sustainability Development Goals 2030 embraces inclusion for children in early childhood education. The European Agency for Special Needs and Inclusive Education in 2015–2017 completed a project on inclusive early childhood education, focusing on structures, processes, and outcomes that ensure a systemic approach to high-quality Inclusive Early Childhood Education (IECE). An ecosystem model of IECE was developed with a self-reflection tool for improving inclusion. This study’s aim was to investigate practitioners’ perspective on the inclusive processes and supportive structures defined in the ecosystem model, to contribute to a deeper understanding of how inclusive practice might be enabled and how barriers for inclusion can be removed. The self-reflection tool was administered in a heterogeneous municipality in Sweden, where inclusive settings are standard. Documentation from approximately 70 teachers on 27 teams was received. The documentation was analysed with qualitative content analysis based on the ecosystem model. The results showed a strong emphasis on group-related processes, whereas data on individual-related processes were scarce. This one-sided focus on the group level might endanger the inclusive processes and outcomes concerning the individual child.
Estimated prevalence of disability and developmental delay among pre‐school children in rural Malawi: Findings from ‘Tikule Limodzi’, a cross‐sectional survey
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This study measured and compared the prevalence of disability and developmental delay among children attending preschool centres in rural Malawi. A cross-sectional survey was conducted in 48 preschool centres in Thyolodistrict, Malawi. Data were collected from parents or guardians of 20 children per centre. Disability was ascertained using the Washington Group/UNICEF Child Functioning Module. Child development was measured using the language and social domains of the Malawi Development Assessment Tool. A total of 960 children were enrolled; 935 (97.4%) children were assessed for disability and 933 (97.2%) for developmental delay; 100 (10.7%) children were identified as having a disability
Child Care Health Dev. 2020;46:187–194.
https://doi.org/10.1111/cch.12741
Zero Project Report 2020: Inclusive education. 75 Innovative Practices and 11 Innovative Policies from 54 countries
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There are several sections in this report:
- Executive summary
- Impact of the Zero Project: Survey results
- Innovative policies and practices: Factsheets and life stories
- The Zero Project Impact Transfer accelerator programme
- An analysis of ICT supporting innovations in inclusive education
- SDGs, Data and inclusive education
- Summary of report in Easy Read.
Themes were:
- Early childhood and preschool
- Formal education (primary and secondary education)
- Universities (tertiary education)
- Vocational education and training
- Non-formal education
- ICT-driven solutions related to education/digital skills
Disability Inclusion Helpdesk Report No: 19 : Primary education for children with disabilities: learning from implementation in Syria
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Summaries on the findings from the following queries:
This query is a short summary of information gathered from interviews with implementers working on education for children with disabilities in Syria.
Summary Report. LEAVE NO CHILD BEHIND Invest in the early years
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A summary overview of the findings of a study led by LIGHT FOR THE WORLD with its partners, supported by the Early Childhood Program of the Open Society Foundations. The aim of the study was to uncover the trends in aid for inclusive Early Child Development (ECD) for 2017. It further identified strategic commitments to ECD, as reflected in policy documents up until 2019. The research examined donors’ spending and commitments in three key areas: early childhood development; inclusive early education and pre-primary; and disability-inclusive early childhood development investments in the sectors of health, nutrition, education and sanitation.
This study presents a baseline on donor investment in ECD services in low- and middle-income countries for the children who are traditionally left behind. It draws lessons from six bilateral donor countries – Belgium, Canada, France, Germany, the United Kingdom (UK) and the United States (US) – as well as the Global Partnership for Education (GPE), European Union (EU) Institutions, the United Nations Children’s Fund (UNICEF) and the World Bank. Donor advocacy briefs for each of these donors are provided.
The study focuses on donor contributions to scaling up ECD services in four African countries: Burkina Faso, Mozambique, Zambia and Zimbabwe
State of the Education Report for India 2019: Children with disabilities
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The past twenty years in India have seen significant legal and political commitments towards universalization of education and the right to education. This report documents the considerable effort undertaken in the country to protect the right to education of children with disabilities (CWD) and outlines what remains to be done to achieve its full realization.
The report is based on extensive research of national and international literature and attempts to provide comprehensive information on the current status of education of CWDs, evidence of achievements and continuing concerns. It extensively draws upon a series of thematic research studies between 2017 and 2018.
The report has taken a participatory approach with contributions, in the form of case studies, from specialists and those working directly in the field.
Adapting and pre-testing the World Health Organization’s Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia
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The World Health Organization’s Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child’s development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization’s Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5).
Autism 2020, Vol. 24(1) 51–63
https://doi.org/10.1177/1362361319848532
LEARN2MOVE 0–2 years, a randomized early intervention trial for infants at very high risk of cerebral palsy: family outcome and infant’s functional outcome
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Purpose: To compare family and functional outcome in infants at very high risk of cerebral palsy, after receiving the family centred programme “Coping with and Caring for infants with special needs (COPCA)” or typical infant physiotherapy.
Materials and methods: Forty-three infants at very high risk were included before 9 months corrected age and randomly assigned to one year COPCA (n = 23) or typical infant physiotherapy (n = 20). Family and infant outcome were assessed before and during the intervention. Physiotherapy intervention sessions were analysed quantitatively for process analysis. Outcome was evaluated with non-parametric tests and linear mixed-effect models.
Results: Between-group comparisons revealed no differences in family and infant outcomes. Within-group analysis showed that family’s quality of life improved over time in the COPCA-group. Family empowerment was positively associated with intervention elements, including “caregiver coaching.”
Conclusions: One year of COPCA or typical infant physiotherapy resulted in similar family and functional outcomes. Yet, specific intervention elements, e.g., coaching, may increase empowerment of families of very high risk infants and may influence quality of life, which emphasizes the importance of family centred services.
Inclusive Classroom Profile (ICP): a cultural validation and investigation of its perceived usefulness in the context of the Swedish preschool
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The Inclusive Classroom Profile (ICP) is a structured observation instrument. It has been developed to support high-quality early childhood inclusion of children with special educational needs and disabilities. The aim of this study is to examine the cultural validity of the instrument in Swedish preschools and to investigate its perceived usefulness in a Swedish preschool context. Ten special educators, who conducted professional dialogues with preschool teachers and other preschool staff members in a Swedish municipality, were enrolled. The instrument was compared with the Swedish national curriculum for the preschool, and the perceptions of special educators were collected by way of dialogue seminar method. Thematic analyses were conducted. The results of the study show that the instrument, with few exceptions, is valid in Sweden, and that the instrument can be useful for special educators conducting professional dialogues about early childhood inclusion with preschool teachers and other preschool staff members. The study has relevance for those who work with early childhood inclusion in Sweden as well as elsewhere, and for those who plan to validate the instrument and investigate its perceived usefulness in a context pertinent to them. High-quality inclusion is on the agenda in many nations, and a Sustainable Development Goal.
‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism
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Background: In this article, we reflected on our experience of the cost of parenting a child with autism, including our ongoing search for educational and therapeutic intervention.
Objectives: We aimed to give an academic insight into the state of autism education and care in South Africa as seen by us, with special attention to its cost and sustainability.
Methods: Using evocative autoethnography as storied scholarship together with critical autism studies, we reflected on stories of the past 5 years since our son’s diagnosis.
Results: Our experiences agree with international studies that establish autism as the most expensive disability. In addition to the high costs of diagnosis, existing intervention and support approaches are unaffordable for the majority of South Africans. We recommend that teachers should be trained to participate in early screening and diagnosis, as well as co-therapists, to strengthen the implementation of inclusive education.
Conclusion: The kind of autism intervention currently offered in South Africa is financially and socially unsustainable. Instead of positioning autism as an individual or family dilemma, it should be addressed as an educational and societal issue. Future research should explore cost-effective options for a developing country context, while promoting best practice within inclusive settings.
Tikule limodzi: Let’s grow together. The impact caregiver training has on children with disabilities in Malawi - Baseline report
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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.
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