Search results for: children with disability

Authors: S. Flynn

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This paper offers a focused commentary on the impact of the current economic downturn on children with ID (intellectual disability), and their families, in the Republic of Ireland. It will examine the practical challenges, serious concerns, and trends in the field of disability with specific regard to the impact of the economic downturn in the Irish context. This includes the impact of cutbacks to services and supports, and the erosion of possibilities for life progression for children with ID as evident within the existing body of research. This focused commentary on core and seminal literature, policy and research will then be used to provide a discussion on what are the core points of learning for policy makers, researchers, practitioners and society as whole.

Keywords: children, disability, economic, recession

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Authors: Amratpal Kaur

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The right to education is universal in nature. This right has been enshrined in Indian Constitution and in various significant international documents. Unfortunately, despite of comprehensive legislation at the regional and international level 98% children with disabilities in developing countries don’t attend schools. Vast majority of children suffering from disability in developing nations lack basic literacy. The paper discusses in detail that the term inclusive education has got impetus all over the world and more so in India in the last decade. India has committed itself to the development of an inclusive education system as it is signatory to the Salamanca Statement and it has strived to achieve it thereon. Due to the shift from medical to social model of disability the emphasis is on inclusive school, so that the disabled children can be integrated in the mainstream easily. Thus, the idea is to educate disabled children along with their peers. The paper focuses on developing a clear understanding of inclusive education and identifying strategies to enhance the education of all children at the regional and international level.

Keywords: inclusion, disability, education, policy

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Authors: Prajakta Bhadgaonkar

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Forgiveness is taught since birth in Indian tradition. However, delivering a disabled child is a trauma for the parents. They keep on blaming themselves for the fault, which they are not responsible. Hence, due to lack of forgiving oneself the quality of life of both parent and child gets affected. In forgiveness, person tries to relieve oneself from the feeling of hatred towards oneself or other person. Forgiveness helps move ahead in the life. Hence, one can handle problem more efficiently resulting into better quality of life. In this study, the 30 parents of children with intellectual disability were contacted to find out quality of life. They were administered standardized measure of quality of life (QOL). The children were between 6 to 8 years of age. Out of these 30 parents, 12 parents (7 females and 5 males) were given forgiveness therapy for three months span. After every one month, the QOL scale was administered. At the end of three months, the significant difference was observed in quality of life of parents of children with intellectual disability. Genderwise there was no significant difference between male and female on quality of life.

Keywords: children with intellectual disability, forgiveness, parents, quality of life

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Authors: Farjina Malek, Julie King, Niki Edwards

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Across the globe more than a billion people live with a disability and a further billion people, mostly carers, are indirectly impacted. While prevalence data is problematic, it is estimated that more than 15% of the population in Bangladesh live with a disability. Disability service infrastructure in Bangladesh is under-developed; and consequently, the onus of care falls on family, especially on mothers. Within the caring role, mothers encounter many challenging experiences which are not only due to the lack of support delivered through the Bangladeshi health care system but also related to the existence of stigma and perception around disability in the Bangladeshi society. Within this perception, the causes of disability are mostly associated with 'God’s will'; 'possession of ghosts on the disabled person'; and 'karma or the result of past sins of the family members especially the mothers'. These beliefs are likely to have a significant impact on the well-being of mothers and their caring experience of children with disability. This is an ongoing qualitative study which is conducting in-depth interviews with 30 mothers from five districts (Dhaka, Mymensingh, Manikganj, Tangail, and Gazipur) of Bangladesh with the aim to explore the impact of social perception and stigma around physical disability on the caring role of the mothers of children with physical disability. The major findings of this study show that the social perception around disability and the social expectation from a mother regarding her caring role have a huge impact on the well-being of mothers. Mothers are mostly expected to take their child on their lap to prove that they are ‘good mother’. These practices of lifting their children with physical disability and keeping them on the lap for a long time often cause chronic back pain of the mothers. Existing social beliefs consider disability as a ‘curse’ and punishment for the ‘sins’ of the family members, most often by the mother. Mothers are blamed if they give birth to ‘abnormal’ children. This social construction creates stigma, and thus, the caring responsibility of mothers become more challenging. It also encourages the family and mothers to hide their children from the society and to avoid seeking accessible disability services. The mothers also compromise their careers and social interaction as they have to stay with their children at home, and that has a significant impact on personal wellbeing, income, and empowerment of the mothers. The research is informed by intersectional theory and employed an interpretive phenomenological methodology to explore mothers’ experience of caring their children with physical disability, and the contribution and impact of key relationships within the family and the intersection with community and services.

Keywords: mother, family carer, physical disability, children, social stigma, key relationship

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Authors: Yvonne Nanaama Brew, Bismark Jampim Abrokwah

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Children with disabilities in Ghana are not routinely registered, and this can imply that they may be neglected in national policy planning since global estimates may not be near the exact numbers. Although there are some studies with reports on the prevalence of disability among children in Ghana, reliable information on the prevalence, types of disability in children, and children who die with disabilities in the Greater Accra region are lacking. The current study seeks to investigate the incidence of disability among children two to fourteen years at selected districts in the Greater Accra region of Ghana. A cross-sectional design is adapted with a quantitative method for this study. Parents with disabled children who access child welfare clinics at the Greater Accra regional hospital, Maamobi hospital, Ga west, and Ga south district hospitals will be selected through purposive sampling for the study. An adapted UNICEF structured Ten Questions will be used to collect relevant data about participants. The responses to the questions will be either 'Yes' or 'No'. Parents with children who answer 'Yes' to a disability and purposively sampled parents with children who answer 'No' to disability will be invited to Child Health Clinic at the Greater Accra regional hospital for a free clinical assessment. Data will be entered into Microsoft Office Excel 2013 and imported into STATA version 15 for analysis. The study is expected to provide reliable disaggregated data on less than fourteen years of children with disabilities in the Greater Accra region. The findings and recommendations of the study will demonstrate the importance of early detection of disability and facilitate more quality and holistic planning of appropriate programmes that best safeguard the rights of children with disabilities in Ghana. It will help in policy and decision-making on children less than fourteen years with disabilities in Ghana. Also, findings will be useful for health facilities in Ghana to plan services for disabled children. Finally, the study is expected to add to the guides for the National Council of Persons with Disabilities to fulfill its legal mandate for disabled persons in Ghana.

Keywords: prevalence, disability, children, Ghana

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Authors: Payal Maheshwari, Maheaswari Brindavan

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The present study aimed at studying the level of perceived self-efficacy of children with learning disability and their mother’s perception about the efficacy of the child and the relationship between the two. The study further aimed at finding out the relationship between the level of perceived self-efficacy of children with learning disability and their academic achievement and their mother’s perception about the Efficacy of the child and child’s Academic Achievement. The sample comprised of 80 respondents (40 children with learning disability and their mothers). Children with learning disability as their primary condition, belonging to middle or upper middle class, living with both the parents, residing in Mumbai and their mothers were selected. Purposive or judgmental and snowball sampling technique was used to select the sample for the present study. Proformas in the form of questionnaires were used to obtain the background information of the children with learning disability and their mother’s. A self-constructed Mother’s Perceived Efficacy of their Child Assessment Scale was used to measure mothers perceived level of efficacy of their child with learning disability. Self-constructed Child’s Perceived Self-Efficacy Assessment Scale was used to measure the level of child’s perceived self-efficacy. Academic scores of the child were collected from the child’s parents or teachers and were converted into percentage. The data were analyzed quantitatively using frequencies, mean and standard deviation. Correlations were computed to ascertain the relationships between the different variables. The findings revealed that majority of the mother’s perceived efficacy about their child with learning disability was above average as well as majority of the children with learning disability also perceived themselves as having above average level of self-efficacy. Further in the domains of self-regulated learning and emotional self-efficacy majority of the mothers perceived their child as having average or below average efficacy, 50% of the children also perceived their self-efficacy in the two domains at average or below average level. A significant (r=.322, p < .05) weak correlation (Spearman’s rho) was found between mother’s perceived efficacy about their child, and child’s perceived self-efficacy and a significant (r=.377, p < .01) weak correlation (Pearson Correlation) was also found between mother’s perceived efficacy about their child and child’s academic achievement. Significant weak positive correlation was found between child’s perceived self-efficacy and academic achievement (r=.332, p < .05). Based on the findings, the study discussed the need for intervention program for children in non-academic skills like self-regulation and emotional competence.

Keywords: learning disability, perceived self efficacy, academic achievement, mothers, children

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Authors: Anna Wiltshire, Rebecca Markham

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Over the last decade, a growing body of evidence has indicated that children with disabilities are often amongst the most excluded and vulnerable in society. The World Bank estimates that 20% of those living in poverty in developing countries are disabled which means that those with the least bear the greatest burden. Furthermore, children with disabilities in Africa have to face a multitude of difficulties ranging from the physical to the psychological. Misconceptions and cultural beliefs are used to justify violence against, or complete shunning of these individuals and their families. In addition, discrimination can prevent access to both education and health services, further compromising these individuals. All children, irrespective of their disability should be able to enjoy human rights without discrimination, but this is often not the case. This poster explores how and why children with disabilities in Africa are subject to violations of their human rights, and suggests ways of addressing these problems.

Keywords: Africa, children, disability, discrimination, human rights

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Authors: Robert L. Williamson, Baris Çetin

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Turkey, due to its geographic location, finds itself the world’s largest host to refugees worldwide, and this nation has done much to educate their refugee population. Turkey’s considerable experience can inform other nations educating refugee children. This systematic review of the literature examined the context, barriers, and responses to successfully educating refugee children in Turkey. Additionally, because some refugee children may have an identified or unidentified disability, the educational experiences of refugee children with disabilities in Turkey were an ancillary focus. Results indicated that while some educational challenges have been successfully met within Turkey, others remain. Additionally, the education of children with disabilities in Turkey is largely unexamined.

Keywords: disability, education, refugee, systematic review, Turkey

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Authors: Jasmin Glock

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Media plays a significant role in terms of shaping and influencing people’s perception of various themes, including disability. Although recent examples indicate progressive attitudes in society, programs across genres continue to portray disability in a negative and stereotypical way. Such a one-sided or stereotypical portrayal of disabled people can further reinforce their marginalized position by turning them into the other. The common trope of the blind or visually impaired woman, for example, marks the character as particularly vulnerable. These stereotypes are easily absorbed and left unquestioned, especially by younger audiences. As a result, the presentation of disability as problematic or painful can instill a subconscious fear of disability in viewers at a very young age. Now the question arises, how can disability be portrayed to children in a more positive way? This paper focuses on the portrayal of physical disability in children’s programming. Using disabled characters from Nickelodeon’s Avatar: The Last Airbender and Avatar: The Legend of Korra, the paper will show that the chosen animated characters have the potential to challenge and subvert disability-based bias and to contribute to the normalization of disability on screen. Analyzing blind protagonist Toph Beifong, recurring support character and wheelchair user Teo, and villain Ming Hua who has prosthetic limbs, this paper aims at highlighting that these disabled characters are far more than mere stereotyped tokens. Instead, they are crucial to the outcome of the story. They are strong and confident while still being allowed to express their insecurities in certain situations. The paper also focuses on how these characters can make disability issues relatable to disabled and non-disabled young audiences alike and how they can thereby contribute to the reduction of prejudice. Finally, they will serve as an example of what inclusive, nuanced, and even empowering disability representation in animated television series can look like.

Keywords: Children, disability, representation, television

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Authors: Afaf Manzoor, Abdul Hameed

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Hopes to attend school is the most effective means to overcome the burden of disability and become a self-reliant, productive citizen. The objectives of the study were to develop a valid and reliable scale to measure hopes of out of school children with disabilities and find an association between hopes and various demographic factors such as type of disability, gender, socio-economic status, and locale, etc. Child Hope theory by Snyder (2003) was used as a framework to develop a measure for the hopes of children. According to this theory, hope is defined as a set of cognition that includes self- perception which establish routes to achieve desired goals (pathways) and motivation for achieving the goals (agency). By applying this theory, inclusion hope scale was developed and validated. The data were collected from 361 out of school children with disabilities living in three districts (Lahore, Sheikupura, Kasur) of Lahore Division by using the cluster sampling technique. Findings of the study indicated that children with intellectual challenges were more hopeless as compared to other types of disabilities. Similarly, children living in urban areas have better hopes for inclusion in school. However, no gender disparity was found in terms of being hopeful to attend schools. The study also includes recommendations to improve hopes for educational inclusion among out of school children with disabilities.

Keywords: out of school children, disability, hopes, inclusion

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Authors: Ivan Traina, Luigi Sangalli, Fabio Tognon, Angelo Lascioli

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Currently, challenges regarding preschooler children are mainly focused on a sedentary lifestyle. Also, motor activity in infancy is seen as a tool for the separate acquisition of cognitive and socio-emotional skills rather than considering neuromotor development as a tool for improving learning abilities. The paper utilized an observational research method to shed light on the results of practicing neuromotor exercises in preschool children with disability as well as provide implications for practice.

Keywords: children with disability, learning abilities, inclusion, neuromotor development

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Authors: Tamer Mesallam, Medhat Yousef, Ayna Almasaad

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BACKGROUND: Cochlear implantation (CI) in children with additional disabilities can be a fundamental and supportive intervention. Although, there may be some positive impacts of CI on children with multiple disabilities such as better outcomes of communication skills, development, and quality of life, the families of those children complain from the post-implant habilitation efforts that considered as a burden. OBJECTIVE: To investigate the outcomes of CI children with different co-disabilities through using the Meaningful Auditory Integration Scale (MAIS) and the Meaningful Use of Speech Scale (MUSS) as outcome measurement tools. METHODS: The study sample comprised 25 hearing-impaired children with co-disability who received cochlear implantation. Age and gender-matched control group of 25 cochlear-implanted children without any other disability has been also included. The participants' auditory skills and speech outcomes were assessed using MAIS and MUSS tests. RESULTS: There was a statistically significant difference in the different outcomes measure between the two groups. However, the outcomes of some multiple disabilities subgroups were comparable to the control group. Around 40% of the participants with co-disabilities experienced advancement in their methods of communication from behavior to oral mode. CONCLUSION: Cochlear-implanted children with multiple disabilities showed variable degrees of auditory and speech outcomes. The degree of benefits depends on the type of the co-disability. Long-term follow-up is recommended for those children.

Keywords: children with disabilities, Cochlear implants, hearing impairment, language development

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Authors: P. Maheshwari, M. Brindavan

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The present research aimed to study the level of socio-emotional skills and perceived self-efficacy of children with learning disability. The study further investigated the relationship between the levels of socio-emotional skills, perceived self-efficacy and academic achievement of children with learning disability. The sample comprised of 40 children with learning disability as their primary condition, belonging to middle or upper middle class, living with both the parents, residing in Mumbai. Purposive or Judgmental and snowball sampling technique was used to select the sample for the study. Proformas in the form of questionnaires were used to obtain the background information of the children with learning disability. A self-constructed Child’s Perceived Self-Efficacy Assessment Scale and Child’s Social and Emotional Skills Assessment Scale was used to measure the level of child’s perceived self-efficacy and their level of social and emotional skill respectively. Academic scores of the child were collected from the child’s parents or teachers and were converted into a percentage. The data was analyzed quantitatively using SPSS. Spearman rho or Pearson Product Moment correlation was used to ascertain the multiple relationships between child’s perceived self-efficacy, child’s social and emotional skills and child’s academic achievement. The findings revealed majority (27) of the children with learning disability perceived themselves having above average level of social and emotional skills while 13 out of 40 perceived their level of social and emotional skills at an average level. Domain wise analyses revealed that, in the domain of self- management (26) and relationship skills (22) more number of the children perceived themselves as having average or below average level of social and emotional skills indicating that they perceived themselves as having average or below average skills in regulating their emotions, thoughts, and behaviors effectively in different situations, establishing and maintaining healthy and rewarding relationships with diverse groups and individuals. With regard to perceived self-efficacy, the majority of the children with learning disability perceived themselves as having above average level of self-efficacy. Looking at the data domain wise it was found that, in the domains of self-regulated learning and emotional self-efficacy, 50% of the children perceived themselves at average or below average level, indicating that they perceived themselves as average on competencies like organizing academic activities, structuring environment to make it conducive for learning, expressing emotions in a socially acceptable manner. Further, the correlations were computed, and significant positive correlations were found between children’s social and emotional skills and academic achievement (r=.378, p < .01), and between children’s social and emotional skills and child’s perceived self-efficacy (r = .724, p < .01) and a positive significant correlation was also found between children’s perceived self-efficacy and academic achievement (r=.332, p < .05). Results of the study emphasize on planning intervention for children with learning disability focusing on improving self-management and relationship skills, self-regulated learning and emotional self-efficacy.

Keywords: learning disability, social and emotional skills, perceived self-efficacy, academic achievement

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Authors: Edwina Owusu Panin

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Families may face significant obstacles as a result of single parenting and disabilities. The amenities and support those single parents need to give their children with disabilities the care they need are frequently out of their reach. These can include financial hardship, limited access to health and education, and social isolation. In addition, cultural attitudes toward disability can worsen these challenges, making it difficult for families to get the support and resources they need. Despite these challenges, many single parents have shown resilience and strength to overcome these difficulties and defend the rights of their children; some, too, have failed in taking care of their disabled children in Ghana. The study traces the developmental process of how single parents cope with disabled children. There is a discouraging fact that single father’s face a much more dreadful task in taking care of their disabled children in Ghana, which is later highlighted in the article. Additional research and support are needed to address the unique needs of families facing these challenges. This case study explores the experiences of single parents raising children with disabilities in Ghana. Using a qualitative approach, the study examines the challenges facing lone parents in caring for children, including access to healthcare, education and social support. In addition, the study examines the impact of cultural disability attitudes on the experiences of single parents and their children and what causes it in Ghana. Findings indicate that single parents in Ghana face significant challenges in accessing resources and support for their children and that cultural attitudes toward disability may aggravate these challenges. However, the study recommends the tenacity and strengths of how to create awareness, protect the welfare and also by encouraging single parents to face these challenges and protect the rights of their children, swaying away influences of bad cultural attitudes.

Keywords: disability, single parenting, case study, assessing

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Authors: Sajed Yaghoubnezhad, Mina Karimi, Seyede Marjan Modirkhazeni

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The goal of this research was to study the relationship between codependency, perceived social support and depression in mothers of children with intellectual disability (ID). The correlational method was used in this study. The research population is comprised of mothers of educable children with ID in the age range of 25 to 61 years. From among this, a sample of 251 individuals, in the multistage cluster sampling method, was selected from educational districts in Tehran, who responded to the Spann-Fischer Codependency Scale (SFCDS), the Social Support Questionnaire and the Beck Depression Inventory (BDI). The findings of this study indicate that among mothers of children with ID depression has a positive and significant correlation with codependency (P<0.01, r=0.4) and a negative and significant correlation with the total score of social support (P<0.01, r=-0.34). Moreover, the results of stepwise multiple regression analysis showed that codependency is allocated a higher variance than social support in explaining depression (R²=0.023).

Keywords: codependency, social support, depression, mothers of children with ID

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Authors: Farah Al-Shatti, Elsayed El-Khamisi, Nabel Suleiman

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The study aimed at identifying the relationship between self-injury behavior and social skills among children with mild intellectual disability (ID) in the state of Kuwait. The sample of the study consisted of 65 males and females with ID; their ages ranged between 8 to 12 years. The study used a measure for rating self-injury behavior designed by the researcher; and a measure for rating social skills was designed. The results of the study showed that there was an increase in the percentages of the two dimensions of the self-injury behavior for children with ID; the self-injury behavior by child’s own body was higher than the self-injury behavior by environmental tools, additionally the results showed that there were statistically significant differences between males and females on the dimensions and total scorer of self-injury scale favor the males, and there were statistically significant differences between them on the dimensions of the social skills and total score favor the females, It also indicated that there was statistically significant negative relationship between the dimensions of the self-injury and the dimensions of the social skills for children with intellectual disability.

Keywords: mild intellectual disability, self injury behavior, social skills, state of Kuwait

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Authors: Jing-Jing Wang, Yang Gao, Heather H. M. Kwok, Wendy Y. J. Huang

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Objectives: Intellectual disability (ID) ranks among the top 20 most costly disorders. A child with ID creates a wide set of challenges to the individual, family, and society, and overweight and obesity aggravate those challenges. People with ID have the right to attain optimal health like the rest of the population. They should be given priority to eliminate existing health inequities. Childhood obesity epidemic and associated factors among children, in general, has been well documented, while knowledge about overweight and obesity in children with ID is scarce. Methods: A cross-sectional study was conducted among 524 Chinese children with ID (males: 68.9%, mean age: 12.2 years) in Hong Kong in 2015. Children’s height and weight were measured at school. Parents, in the presence of their children, completed a self-administered questionnaire at home about the children’s physical activity (PA), eating habits, and sleep duration in a typical week as well as parenting practices regarding children’s eating and PA, and their socio-demographic characteristics. Multivariate logistic regression estimated the potential risk factors for children being overweight. Results: The prevalence of overweight and obesity in children with ID was 31.3%, which was higher than their general counterparts (18.7%-19.9%). Multivariate analyses revealed that the risk factors of overweight and obese in children with ID included: comorbidity with autism, the maternal side being overweight or obese, parenting practices with less pressure to eat more, children having shorter sleep duration, longer periods of sedentary behavior, and higher intake frequencies of sweetened food, fried food, and meats, fish, and eggs. Children born in other places, having snacks more frequently, and having irregular meals were also more likely to be overweight or obese, with marginal significance. Conclusions: Children with ID are more vulnerable to being overweight or obese than their typically developing counterparts. Identified risk factors in this study highlight a multifaceted approach to the involvement of parents as well as the modification of some children’s questionable behaviors to help them achieve a healthy weight.

Keywords: prevalence, risk factors, obesity, children with disability

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Authors: Shyamani Hettiarachchi

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The experiences of children with disabilities and their siblings are seldom documented in Sri Lanka. The aim of this study was to uncover the narratives of young children with disabilities and their siblings in Sri Lanka. Fifteen children with disabilities and fifteen siblings were included in this study. Opportunities were offered to the participants to engage in artwork and story making activities. Narratives on the artwork and stories were gathered and the data analyzed using the key principles of Framework Analysis to determine the key themes. The key themes to emerge were of love, protectiveness, insecurity and visibility. The results highlight the need to take account of the experiences of children with disabilities and their siblings to understand how they understand and cope with disability.

Keywords: art, children with disabilities, narratives, siblings, storymaking

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Authors: Charles Masulani Mwale

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Background: It is argued that 85% of children with the disability live in resource-poor countries where there are few available disability services. A majority of these children, including their parents, suffer a lot as a result of the disability and its associated stigmatization, leading to a marginalized life. These parents also experience more stress and mental health problems such as depression, compared with families of normal developing children. There is little research from Africa addressing these issues especially among parents of intellectually disabled children. WHO encourages research on the impact that child with a disability have on their family and appropriate training and support to the families so that they can promote the child’s development and well-being. This study investigated the parenting experiences, mechanisms of coping with these challenges and psychosocial needs while caring for children with intellectual disabilities in both rural and urban settings of Lilongwe and Mzuzu. Methods: This is part of a larger Mixed-methods study aimed at developing a contextualized psychosocial intervention for parents of intellectually disabled children. 16 focus group discussions and four in-depth interviews were conducted with parents in catchments areas for St John of God and Children of Blessings in Mzuzu and Lilongwe cities respectively. Ethical clearance was obtained from COMREC. Data were stored in NVivo software for easy retrieval and management. All interviews were tape-recorded, transcribed and translated into English. Note-taking was performed during all the observations. Data triangulation from the interviews, note taking and the observations were done for validation and reliability. Results: Caring for intellectually disabled children comes with a number of challenges. Parents experience stigma and discrimination; fear for the child’s future; have self-blame and guilt; get coerced by neighbors to kill the disabled child; and fear violence by and to the child. Their needs include respite relief, improved access to disability services, education on disability management and financial support. For their emotional stability, parents cope by sharing with others and turning to God while other use poor coping mechanisms like alcohol use. Discussion and Recommendation: Apart from neighbors’ coercion to eliminate the child life, the findings of this study are similar to those done in other countries like Kenya and Pakistan. It is recommended that parents get educated on disability, its causes, and management to array fears of unknown. Community education is also crucial to promote community inclusiveness and correct prevailing myths associated with disability. Disability institutions ought to intensify individual as well as group counseling services to these parents. Further studies need to be done to design culturally appropriate and specific psychosocial interventions for the parents to promote their psychological resilience.

Keywords: psychological distress, intellectual disability, psychosocial interventions, mental health, psychological resilience, children

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Authors: Wike Wike

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The aim of this study is to investigate the experience of mothers of autistic children in Indonesia in raising the children and obtaining services for them through the adequate of information. The study seeks to contribute to the knowledge emerging from the women as a mother of children with autism on health and disability area. There is silence in the Indonesian literature on this perspective, especially about the parents and/or mothers of autistic children that is the focus of this analysis. Therefore, in order to capture the points of view emerging from the mothers, a qualitative study design has been applied. The main data for this qualitative study was collected from interviews (semi-structured interview and focus group discussion) with the mothers of children with autism who are member of parenting group in autistic schools and rehabilitation centers in one of Indonesian regional cities. This study reveals that the mothers’ experience in raising a child who is diagnosed with autism is rooted in limited knowledge on autism, limited knowledge on availability of services and limited knowledge on service options. Compounding this is limited availability and accessibility of the services that are important to their child's development. An important contribution of this study is to show how tapping into the experience of mothers can provide much needed information to policy making and service planners and implementers that can improve the services for children with autism and their families.

Keywords: mothers, children with autism, disability services and policy, services

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Authors: Sharmila Rathee

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Individuals with disability/ies often face negative attitudes, discrimination, exclusion, and inequality of treatment due to stigmatization and stigmatized treatment. While a significant number of studies in field of stigma suggest that group-identification has positive consequences for stigmatized individuals, ironically very miniscule empirical work in sight has attempted to investigate in-group identification as a coping measure against stigma, humiliation and related experiences among disability group. In view of death of empirical research on in-group identification among disability group, through present work, an attempt has been made to examine the experiences of stigma, humiliation, and in-group identification among disability group. Results of the study suggest that use of in-group identification as a coping strategy is not uniform across members of disability group and degree of in-group identification differs across different sub-groups of disability groups. Further, in-group identification among members of disability group depends on variables like degree and impact of disability, factors like onset of disability, nature, and visibility of disability, educational experiences and resources available to deal with disabling conditions.

Keywords: disability, stigma, in-group identification, social identity

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Authors: Emma Louise McKinney

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There is a global move to integrate children who are Deaf and Hearing Impaired into regular classrooms with their hearing peers with an inclusive education framework. This paper examines the current education situation for children who are Deaf and Hearing Impaired in South Africa, Madagascar, Malawi, Zimbabwe, and Namibia. Qualitative data for this paper was obtained from the author’s experiences working as the Southern African Education Advisor for an international organization funding disability projects. It examines some of the challenges facing these children and their teachers relating to education. Challenges include cultural stigma relating to disability and deafness, a lack of hearing screening and early identification of deafness, schools in rural areas, special schools, specialist teacher training, equipment, understanding of how to implement policy, support, appropriate teaching methodologies, and sign language training and proficiency. On the other hand, in spite of the challenges some teachers are able to provide quality education to children who are Deaf and Hearing Impaired. This paper examines both the challenges as well as what teachers are doing to overcome these.

Keywords: education of children who are deaf and hearing impaired, Southern African experiences, challenges, triumphs

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Authors: Mafalda Moreira, Diana Alba, Inês Paiva Ferreira, Rita Calejo, Ana Rita Soares, Leonilde Machado

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Intellectual disability (ID) is characterized by deficits in intellectualfunctioningassociatedwithalterations in the adaptive behaviour, whose onset is inthedevelopmentalperiod. Itaffects 3% of the population, ofwhich 10% have a geneticaetiology. One of those causes isAlwadeiSyndrome, with 3 cases describedworldwide. It results from a homozygous nonsense mutation in theRUSC2 gene andisassociatedwithintellectualdisabilityanddysmorphic facialfeatures. Theauthorsreportthe case of a 5-year-old-boy, born to a healthymotherafter a full-termuneventfulpregnancy, thatwasreferred to Neurodevelopmentalconsultationdue toglobal developmentaldelay. Familyhistoryrevealedlearningdifficulties in the paternal brotherhood. Milddismorphicfeatureswereevidentsuch as darkinfraorbitalregion, low-set ears, beakednose, retrognathism, high-archedpalateandjointhyperlaxity. WechslerIntelligenceScale for Children III fullscaleIQ quoted 61. Karyotypeandchromosomalmicroarrayanalysiswerenormal, as well as the fragile X molecular study. DNA sequencingwasthenperformedandallowedtheidentificationof amutation in the RUSC2 gene. Theetiologicaldiagnosisof ID remains unknown in up to 80% of cases, creatinguncertainty in children’sfamilies. Theadvances in DNA sequencingtechnologieshaveincreasedourknowledgeofthegeneticdiseasesinvolved, as theAlwadeisyndromewasonlydescribedsince 2016. Thegeneticdiagnosisof ID allowsfamilygeneticcounselingandenablesthedevelopmentof target therapeutic approaches.

Keywords: intellectual disability, genetic aetiology, alwadei syndrome, RUSC2

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Authors: Myriam Castonguay, Florence Vinit

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This study aims to gain a better understanding of the lived experience of seven children growing up in a family where another child is severely disabled, informed by family systems theory and the socio-ecological model of development. In depth semi-structured interviews were conducted with seven children who described they everyday life since their brother’s or sister’s diagnosis. Thematic analysis revealed four themes : struggling with loneliness inside the family, supporting the disabled child through its journey, accommodating to a changing routine and keeping a “bubble” for oneself. Brothers and sisters depict a family life characterized by much loneliness, with severe disabilities requiring ongoing care and prolonged hospitalizations. In the midst of adversity, siblings describe themselves as highly committed to supporting the disabled child and to preserve family cohesion, even if that means getting exposed to emotionally challenging situations and adjusting their daily routine frequently. Children recount that keeping up with schoolwork and leisure activities of their own is central to their well-being. Having a space where one can reconnect with his ordinary life as a kid is also deemed very important. This study reminds us that more needs to be done to counteract the loneliness experienced by siblings through the family experience of disability. Family members and clinicians need to be extra vigilant to ensure siblings’ needs don’t go unnoticed or dismissed, as it may be difficult for this population of children to voice their own experience and needs. Family, school and other actors in the community may help brothers and sisters pursue their personal dreams, goals and projects, to continue experiencing well-being despite adverse life circumstances.

Keywords: sibling’s lived experience of disability, sibling’s needs at various levels of the ecosystem, family adjustment to the disability experience, supporting family wellness through the disability experience

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Authors: Lidon Lashley

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This paper presents how the social model of disability can be used to reshape inclusive education practices in Guyana. Inclusive education in Guyana is metamorphosizing but still firmly held in the tenets of the Medical Model of Disability which influences the experiences of children with Special Education Needs and/or Disabilities (SEN/D). An ethnographic approach to data gathering was employed in this study. Qualitative data was gathered from the voices of children with and without SEN/D as well as their mainstream teachers to present the interplay of discourses and subjectivities in the situation. The data was analyzed using Adele Clarke's postmodern approach to grounded theory analysis called situational analysis. The data suggest that it is possible but will be challenging to fully contextualize and adopt Loreman's synthesis and Booths and Ainscow's Index in the two mainstream schools studied. In addition, the data paved the way for the presentation of the social model framework specific to Guyana called 'Southern Inclusive Education Framework for Guyana' and its support tool called 'The Inclusive Checker created for Southern mainstream primary classrooms.

Keywords: social model of disability, medical model of disability, subjectivities, metamorphosis, special education needs, postcolonial Guyana, inclusion, culture, mainstream primary schools, Loreman's synthesis, Booths and Ainscow's index

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Authors: Caroline Denaes

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The ability to read is crucial for a successful path in school and in a social and professional context. Children with mild intellectual disability are confronted to serious difficulties in literacy. A lot of them do not read or are illiterate. Only one child out of five is able to acquire basic reading skills, which increases the likelihood to misfit in society, especially when these children grow up and cannot manage themselves in situations requiring higher reading levels. One way to help these children acquiring basic reading skills is to use analogical reasoning, as some researchers demonstrated that this mechanism is fundamental for any reading process. For this purpose, we developed computerized analogies displayed on a touch screen tablet. Analogies are comparisons that give children a framework they can use to understand new information. They work by comparing one thing to another in order to emphasize some mutual quality. If one of the items is unfamiliar, that mutual quality can help make it understandable, or it can cause the children to consider something familiar in some new way, such as transferring what they know about familiar words to help them identify unfamiliar words. In addition, using touch screen tablets represents several advantages: the ease of use, the relevance to this specific population and the appeal of a self-directed activity gives individuals and practitioners a modern tool that differs from the traditional paper-and-pencil material. In addition, the touch screen dimension is especially appropriate for children as assistive technology has been found to be more motivating that any other types of devices and improves the children’ attention span.

Keywords: literacy, intellectual disabilities, touch screen techonology, literacy skill

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Authors: Chamaraja Parulli

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Family is an important social institution devoted to the growth of a child, and parents are the important agents of socialization. Mentally challenged children are those who are affected by intellectual disability, which is manifested by limitation in intellectual functioning and adoptive behavior. Intellectual disability affects about 3-4 percentage of the general population. Intellectual disability is caused by genetic condition, problems during pregnancy, problems during childbirth, or illness. Mental retardation is the world’s most complex and challenging issue. The stigmatization of disability results in social and economic marginalization. Parents of the mentally challenged children will have a very high level of parenting stress, which is significantly more than the stress perceived by the parents of the children without disability. The prevalence of severe mental disorder called Schizophrenia is among 1.1 percent of the total population in India. On the other hand, 11 to 12 percent is the overall lifetime occurrence rate of mental disorders. While the government has a separate program for mental health, the segment is marred by lack of adequate doctors and infrastructure. Mentally retarded children have certain limitations in mental functioning and skills, which makes them slow learners in speaking, walking, and taking care of their personal needs such as dressing and eating. Accepting a child with mental handicap becomes difficult for parents and to the whole family, as they have to face many problems, including those of management, finance, deprivation of rest, and leisure. Also, the problems faced by the parents can be seen in different areas like – educational, psychological, social, emotional, financial and family related issues. The study brought out various difficulties and problems faced by the parents as well as family members. The findings revealed that the mental retardation is not only a medico-psychological problem but also a socio-cultural problem. The study results, however, indicate that the quality of life of the family having children with mental retardation can be improved to a greater extent by building up a child-friendly ambience at home. The main aim of the present study is to assess the problems faced by the parents of mentally challenged children, with the help of personal interview data collected from the parents of mentally challenged children, residing in Shimoga District of Karnataka State, India. These individuals were selected using stratified random sampling method. Organizing effective intervention programs for parents, family, society, and educational institutions towards reduction of family stress, augmenting the family’s strengths, increasing child’s competence and enhancing the positive attitudes and values of the society will go a long way for the peaceful existence of the mentally challenged children.

Keywords: mentally challenged children, intellectual disability, special children, social infrastructure, differently abled, psychological stress, marginalization

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Authors: Humara Bano, Nyla Anjum

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Disability in any form has great impact not only for the person facing it but also for its family members too. This effect may be so severe that may lead to mal adjustment of any member of the family in society as well. This impact has also been multiplied due to negative attitudes of the society, unawareness about the needs of special needs and no legislation for the parents of children with special needs. As a result not only the separations among the parents have been reported but also the normal siblings in the home are also badly affected in their daily lives. The situation is more challenging when more than one child with disability is present in the family. The main objectives of this paper are to unfold the relationship of variety of disabilities (hearing, visual or physical impairment, mental retardation, speech impairment) in i) developing depression in home setting, ii) social exclusion, iii) anxiety and aggression and iv) development of insecure feelings among family members of the persons with disabilities, as well as, v) to identify coping strategies to manage the special needs by family members too. To reach on conclusion about fifty families (having any sort of disability in their homes) have been interviewed on basis of convenient sampling. Correlation, ANOVA and different analysis have been used to identify the relationship of disability in developing depression among family members in line of above mentioned problems. Results revealed that depression due to disability among families is a common phenomenon and adversely have affected their lives in daily routines as well as in following their life achievements. Coping with the situation and recommending various remedies by parents is the positive reflection of this study too that can help to families in managing their mental health.

Keywords: depression, anxiety and aggression, social exclusion, parents of children with special needs

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Authors: Anna Ślebioda

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The paper discusses intersections between disability and femininity. Their imbrication may impede negotiation of identity. The analysis of a blog of a women with disability aims to prove this hypothesis. It involves 724 entries written in the span of six years. The conceptual framework for the considerations constitute the concepts of stigma and spoiled identity, and overlapping elements of femininity and disability. The empirical part comprises content analysis. It allows to locate the narrative on femininity and disability within the dimensions of imbricated categories described in the theoretical part. The results demonstrate aspects to consider in further research on identity in women with disabilities.

Keywords: disability, femininity, spoiled identity, stigma

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Authors: Ayelet Gur

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Background: In recent years we are witnessing a welcome trend in which more children/persons with disabilities are living at home with their families and within their communities. This trend is related to various policy innovations as the UN Convention on the Rights of People with Disabilities that reflect a shift from the medical-institutional model to a human rights approach. We also witness the emergence of family centered approaches that perceive the family and not just the individual with the disability as a worthy target of policy planning, implementation and evaluation efforts. The current investigation aims to explore economic, psychological and social factors among households of families of children or adults with intellectual disabilities in Israel and to present policy recommendation. Methods: A national sample of 301 households was recruited through the education and employment settings of persons with intellectual disability. The main caregiver of the person with the disability (a parent) was interviewed. Measurements included the income and expense surveys; assets and debts questionnaire; the questionnaire on resources and stress; the social involvement questionnaire and Personal Wellbeing Index. Results: Findings indicate significant gaps in financial circumstances between households of families of children with intellectual disabilities and households of the general Israeli society. Households of families of children with intellectual disabilities report lower income and higher expenditures and loans than the general society. They experience difficulties in saving and coping with unexpected expenses. Caregivers (the parents) experience high stress, low social participation, low financial support from family, friend and non-governmental organizations and decreased well-being. They are highly dependent on social security allowances which constituted 40% of the household's income. Conclusions: Households' dependency on social security allowances may seem contradictory to the encouragement of persons with intellectual disabilities to favor independent living in light of the human rights approach to disability. New policy should aim at reducing caregivers' stress and enhance their social participation and support, with special emphasis on families of lower socio-economic status. Finally, there is a need to continue monitoring the economic and psycho-social needs of households of families of children with intellectual disabilities and other developmental disabilities.

Keywords: disability policy, family policy, intellectual and developmental disabilities, Israel, households study, parents of children with disabilities

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