Search results for: Experiences of Family Carers of People Intellectual Disabilities During the COVID-19 Pandemic

Authors: Faris Algahtani

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Every child has a right to education. This is one of the laws in the constitution and it empowers every child to access knowledge but it does not, however, allocate special interest to the rights of education for children with disabilities. It also does not address the challenges that teachers of such children face while trying to educate them. This study was conducted at government schools of Saudi Arabia. As the teaching profession is the most valuable profession and deserves to have its challenges tackled. This paper explores the challenges that teachers face as they try to teach students who have intellectual disabilities (ID). It looks at the daily challenges of a teacher who has to teach both children with disabilities and those without. The literature review shed light on the various aspects of mainstream education from the classroom to the outside environment to the teachers involved in mainstream education. The study employed qualitative methods in which Focus Group Discussions were utilized and Twenty (N=20) special education teachers were randomly sampled from primary schools through 6 groups of teachers from 6 different schools were interviewed through semi-structured interviews with the aim of drawing collective perceptions rather than personal perceptions about the challenges. The study found that most teachers had similar perceptions about the challenges that teachers face as they educate students with intellectual disabilities. The study recommends that The Ministry of Education should consider increasing the availability of special needs courses, workshops and conference for special education teachers.

Keywords: intellectual disabilities, inclusion, mainstream schools, disabilities, special education teachers

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Authors: Wann-Yun Shieh, Hsin-Yi Kathy Cheng, Yan-Ying Ju, Yu-Chun Yu, Ya-Cheng Shieh

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Adolescents who have intellectual disabilities often demonstrate maladaptive behaviors in their daily activities due to either physical abnormalities or neurological disorders. These adolescents commonly struggle with their cognition and movement coordination when it comes to executing tasks such as throwing or catching objects smoothly, quickly, and gracefully, in contrast to their typically developing peers. Simply measuring movement time and distance doesn't provide a comprehensive view of their performance challenges. In this study, a ball-playing approach was proposed to assess the cognition and movement coordination of adolescents with intellectual disabilities using a smart ball equipped with an embedded inertial sensor. Four distinct ball games were specifically designed for this smart ball: two focusing on lower limb activities (dribbling along a straight line and navigating a zigzag path) and two centered around upper limb tasks (picking up and throwing and catching the ball). The cognition and movement coordination of 25 adolescents with intellectual disabilities (average age 18.36 ± 2.46 years) with that of 25 typically developing adolescents (average age 18.36 ± 0.49 years) were compared in these four tests. The results clearly revealed significant differences in the cognition and movement coordination between the adolescents with intellectual disabilities and the typically developing adolescents. These differences encompassed aspects such as movement speed, hand-eye coordination, and control over objects across all the tests conducted.

Keywords: cognition, intellectual disabilities, movement coordination, smart ball

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Authors: Yetunde M. Dairo, Johnny Collett, Helen Dawes

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Background and Aim: Engagement with physical activity (PA) research is poor among adults with intellectual disabilities (ID), particularly in those from residential homes. This study explored why, by asking managers of residential homes, adults with ID and their carers. Methods: Participants: A convenient sample of 23 individuals from two UK local authorities, including a group of ID residential home managers, adults with ID and their support staff. Procedures: A) Residential home managers (n=6) were asked questions about their willingness to allow their residents to participate in PA research; B) eleven adults with ID and their support workers (n=6) were asked questions about their willingness to accept 7-day accelerometer monitoring and/or the International Physical Activity Questionnaire-short version (IPAQ-s) as PA measures. The IPAQ-s was administered by the researcher and they were each provided with samples of accelerometers to try on. Results: A) Five out of six managers said that the burden of wearing the accelerometer for seven days would be too high for the people they support, the majority of whom might be unable to express their wishes. They also said they would be unwilling to act as proxy respondents for the same reason. Additionally, they cited time pressure, understaffing, and reluctance to spend time on the research paperwork as further reasons for non-participation. B) All 11 individuals with ID completed the IPAQ-s while only three accepted the accelerometer, one of whom was deemed inappropriate to wear it. Reasons for rejecting accelerometers included statements from participants of: ‘too expensive’, ‘too heavy’, ‘uncomfortable’, and two people said they would not want to wear it for more than one day. All adults with ID (11) and their support workers (6) provided information about their physical activity levels through the IPAQ-s. Conclusions: Care home managers are a barrier to research participation. However, adults with ID would be happy for the IPAQ-s as a PA measure, but less so for the 7-day accelerometer monitoring. In order to improve participation in this population, the choice of PA measure is considered important. Moreover, there is a need for studies exploring how best to engage ID residential home managers in PA research.

Keywords: intellectual disability, physical activity measurement, research engagement, research participation

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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: Miriam Colleran, Barbara Sheehy-Skeffington

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Background: To explore if there are unique features in the palliative care needs of patients with intellectual disability that may impact on planning for resource and service provision for them. Aim: The purpose of this practice review is to assess the indications for, numbers of and outcomes of care for adults with intellectual disabilities referred to a specialist palliative care service over a twoyear period. Service utilization aspects considered included the frequency of home visits by a specialist palliative care doctor or clinical nurse specialist and the number of hospice admissions that occurred for the patients. Method: A retrospective review was carried out of persons 18 years and older with intellectual disabilities referred to a specialist palliative care service over a 5-year period from 30.11.3018 to 29.11.2023. A manual review was carried out of the register using key terms, namely, known residential care and community dwelling places of service providers for persons with intellectual disabilities in the area and registered diagnoses in addition to the patients known to the clinicians who had intellectual disabilities. Results: 25 referrals were made to the specialist palliative care service of 23 persons with intellectual disabilities during that time. However, this may be an underestimate. 15 women and 8 men were referred with an age range of 19 to 86 years of age. The majority had a diagnosis of Down’s syndrome or Trisomy 21. 5 patients referred did not have home visits from the specialist palliative care team. A range of 2 to 48 phone calls per person occurred by the specialist palliative care team regarding this cohort of patients. The outcomes for the patients included discharge and death. The majority of patients that died, did so in the community. One person however died in hospital. Another person died in a hospice out of area. Conclusion: Providing specialist palliative care for adults with intellectual disabilities is an important element of palliative care. The dominance of the community as the place of death for these patients and the limited number of patients dying in either hospice or hospital are noteworthy. Further research is necessary and education to inform, support, and empower specialist palliative care professionals in optimizing palliative and end-of-life care for persons with intellectual disabilities and to inform service development and provision.

Keywords: about intellectual disability, palliative care

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Authors: Monika Skura

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People with physical disabilities, as with other people with differences in appearance or style of functioning come under negative social mechanisms. Therefore, it is worth asking what the relationship of the group is, who experience psychosocial effects because of their physical disability, towards people with intellectual disabilities, hearing impairments, visual impairments, mental illnesses, and their own physically disabled group. To analyse the perception of people with a physical disability, the study explores three areas: the acceptance or rejection of society’s stigmatization towards persons with disabilities; the importance of their own experience regarding their disability, in relation to another kind of disability; their level of acceptance to social interactions, in relation to various types of disabilities. The research sample consisted of 90 people with physical disabilities, who suffer from damage to the locomotor system. The data was collected using a questionnaire and the Adjective Check List by H. B. Gough and A. B. Heilbrun. This study utilized focus interviews to develop survey items for the questionnaire. The findings highlight that the response from those who were physically disabled agreed with the opinions of general society, not only with the issue of promoting integrated solutions and offering assistance but also having the same preferences and opinions about specific types of disability. However, their perception regarding their own group was noticeably different from that of general society. In the light of the study, for people with physical disabilities, just as for able-bodied people, it can be challenging to develop a meaningful relationship with people who have disabilities. All forms of disability suffer from negative attitudes and opinions that exist in society. The majority of those who were researched were focused primarily on their own problems, this inevitably hinders the integrity of the entire group, making it more difficult for it to find a cohesive voice, in which to promote their place within society.

Keywords: general society’s opinions about disability, people with different kinds of disability, perception, physical disability

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Authors: Yu-Ching Liu

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Background: Family numbers usually take responsibility for taking care of their elderly relatives, especially parents. Caring for a patient with chronic diseases is a stressful experience, which makes carers suffer physical and mental health stress, difficulties maintaining family relationships and issues in participating in the labor market, which may lower their quality of life (QoL). The issue of providing care to relatives with chronic illness has been widely explored in Taiwan, but most studies focus on the need for full-time caregivers. Objective: The main goal of this study was to examine the topic of working carers involved in the decision-making process of LTC services and to explore what affects working carers considering when they choose the care services for their disabled, elderly relatives. Method: A total of 7 working caregivers were enrolled in this study. A face-to-face and semi-structured in-depth qualitative interview study were conducted to explore the caregivers' perspectives. Results: Working carers have a positive experience of using LTC service because it allows them to kill two birds with one stone, continue employment, and care for an elderly disabled relative. However, working carers have still been struggling to find friendly community-based LTC services. There were no longer available community services that could be used with the illness condition of patients getting worse. As such, patients have to be cared for at home, which might increase the caregiver burden of carers. Conclusion: Working family caregivers suffer from heavy physical and psychological burdens as they not only have to maintain their employment but care for elderly disabled relatives; however, the current support provided is insufficient. The design of services should consider working carers' employment situation and need rather than the only caring situation of patients at home.

Keywords: family caregiver, Long-term care, work-life balance, decision-making

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Authors: Lorna Martha Dreyer

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Consistent with the changing paradigm on the rights of people with disabilities and in pursuit of social justice, there is internationally an increase in students with disabilities enrolling at Higher Education Institutions (HEIs). This trend challenges HEI’s to transform and attain Education for All (EFA) as a global imperative. However, while physical and sensory disabilities are observable, students with specific learning disabilities (SLD) do not present with any visible indications and are often referred to as “hidden” or “invisible” disabilities. This qualitative case study aimed to illuminate the experiences of students with SLDs at a South African university. The research was, therefore, guided by Vygotsky’s social-cultural theory (SCT). This research was conducted within a basic qualitative research methodology embedded in an interpretive paradigm. Data was collected through an online background survey and semi-structured interviews. Thematic qualitative content analysis was used to analyse the collected data systematically. From a social justice perspective, the major findings suggest that there are several factors that impede equal education for students with SLDs at university. Most participants in this small-scale study experienced a lack of acknowledgment and support from lecturers. They reported valuing the support of family and friends more than that of lecturers. It is concluded that lecturers need to be reflective of their pedagogical practices if authentic inclusion is to be realised.

Keywords: higher education, inclusive education, pedagogy, social-cultural theory, specific learning disabilities

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Authors: Michael Rahme

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Over the past decade, there is an overwhelming consensus spanning across academia, government commissions, and civil societies that concede that individuals with disabilities (IWDs), particularly those with intellectual differences, are a demographic most ‘vulnerable’ to experiences of sexual violence. From this global accord, numerous policies have sprouted in the protection of this ‘pregnable’ sector of society, primarily framed around liberal obligations of stewardship over the ‘defenceless.’ As such, these initiatives mainly target post-incident or victim-based factors of sexual violence, which is apparent in proposals for more inclusive sexual education and accessible contact lines for IWDs. Yet despite the necessity of these initiatives, sexual incidents among this demographic persist and, in nations such as Australia, continue to rise. Culture of Violence theory reveals that such discrepancies in theory and practice stem from societal structures that frame individuals as ‘vulnerable’, ‘impregnable’, or ‘defenceless’ because of their disability, thus propagating their own likelihood of abuse. These structures, as embodied by the Australian experience, allow these sexual violences to endure through cultural ideologies that place the IWDs ‘failures’ at fault while sidelining the institutions that permit this abuse. Such is representative of the initiatives of preventative organizations like People with Disabilities Australia, which have singularly strengthened victim protection networks, despite abuse continuing to rise dramatically among individuals with intellectual disabilities alone. Yet regardless of this rise, screenings of families and workers remain inadequate and practically untouched, a reflection of a tremendous societal warp in understanding surrounding the lived experiences of IWDs. This theory is also representative of broader literature, where the study of the perpetrators of disability rights, particularly sexual rights, is almost unapparent in a field that is already seldom studied. Therefore, placing power on the abuser via stripping that of the victims. As such, the Culture of Violence theory (CVT) sheds light on the institutions that allow these perpetrators to prosper. This paper, taking a CVT approach, aims to dissipate this discrepancy in the Australian experience by way of a qualitative analysis of all available court proceedings and tribunals between 2020-2022. Through an analysis of the perpetrator, their relation to the IWD, and the motives for their actions granted by court and tribunal transcripts and the psychological, and behavioural reports, among other material, that have been presented and consulted during these proceedings. All of which would be made available under the 1982 Freedom of Information Act. The findings from this study, through the incorporation of CVT, determine the institutions in which these abusers function and the ideologies which motivate such behaviour; while being conscious of the issue of re-traumatization and language barriers of the abusees. Henceforth, this study aims to be a potential policy guide on strengthening support institutions that provide IWDs with their basic rights. In turn, undermining sexual violence among individuals with intellectual disabilities at its roots.

Keywords: criminal profiling, intellectual disabilities, prevention, sexual violence

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Authors: Soungwan Kim

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This paper discusses an analysis of how the characteristics of resources at vocational rehabilitation facilities for the disabled affect the improvement of independency skills among people with severe disabilities. The analysis results indicate that more internal financial resources and more connections to local communities among network resources had greater effects on improving the independency of people with severe disabilities. Based on this result, this paper presents strategies for mobilizing resources to improve the independency of people with severe disabilities at vocational rehabilitation facilities.

Keywords: vocational rehabilitation facility for people with disabilities, types of resources, independency, network resources

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Authors: Faris Algahtani

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The current study aimed to reveal the extent to which evidence-based practices are applied in programs to integrate students with intellectual disabilities from the point of view of their teachers in Yanbu Governorate, and to reveal statistically significant differences in their application of evidence-based practices according to the following variables: gender, educational qualification, experience and training courses. The researcher used the descriptive approach, and accordingly; she designed a questionnaire consisting of 22 phrases applied it to a random sample of (97) teachers of intellectual disability in the integration programs of the Ministry of Education in the government sector in Yanbu Governorate, with (49) male teachers and (48) female teachers. The study showed that teachers of students with intellectual disabilities apply evidence-based practices in programs to integrate students with intellectual disabilities to a large extent. Among the most prominent of these practices came reinforcement in the first place, followed by using visual stimuli/aids, and in the third-place came starting with less complex or challenging skills then moving to more difficult skills. The results also showed no statistically significant differences over the extent of the application attributed to the variables of experience, qualification or training. On the other hand, there were statistically significant differences over the extent of the application attributed to gender in favor of females.

Keywords: evidence-based practices, intellectual disability, inclusion programs, teachers of students with intellectual disabilities

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Authors: Hee-Jung Seo, Yunjung Lee, Areum Han, Heeyoung Park, Se-Hyuk Park

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The purpose of this study was to analyze the relationship between happiness and depression among people with disabilities and to analyze the social phenomenon of leisure activities among them to promote physical and leisure activities for people with disabilities. The research methods included analyzing differences in happiness according to depression classification. A total of 281 people with disabilities were analyzed using SPSS WIN Ver. 29.0. In addition, the SumTrend platform was used to analyze terms related to 'leisure activities for the disabled.' The findings can be summarized into two main points: First, there were significant differences in happiness according to depression classification. Second, there were 20 mentions before COVID-19, 34 mentions after COVID-19, and currently 43 mentions, with high positive rates observed in each period. Based on these results, the following conclusions were drawn: First, measures for people with disabilities include strengthening online resources and services, social distancing response policies, improving accessibility, and providing support and financial assistance. Second, measures for non-disabled individuals emphasize the need for education and information provision, promoting dialogue and interaction, ensuring accessibility, and promoting inclusive cultural awareness and attitude change.

Keywords: leisure activities, individuals with disabilities, COVID-19 pandemic, depression

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Authors: Ingrid van der Heijden, Kristen Dunkle, Rachel Jewkes

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Background: Emerging literature on prevalence shows that men with disabilities are four more times likely than men without disabilities to experience sexual violence during their lifetime. However, compared to women with disabilities, men with disabilities still have lesser experiences of violence. While empirical evidence on the prevalence of victimization of men with disabilities is emerging, there is scarcer evidence highlighting disabled men’s perpetration of different forms of violence, particularly intimate partner violence. We can assume that men are likely to be both perpetrators and victims of violence, making more complex the causes and risks of violence. Gender norms and disability stigma play important roles in men’s experiences of violence. Men may be stigmatized because of their inability to attain hegemonic masculine ideals of strength, control over women and sexual conquest, which makes them more susceptible to emotional, physical and sexual abuse. Little to no evidence exists of men with disabilities’ experiences of perpetration of intimate partner violence, family violence or community violence. So far studies on male victimization do not succeed to offer contextual evidence that would highlight why and how men with disabilities perpetrate and/or are victims of sexual or other forms of violence. Objective: The overall aim to highlight men with disabilities’ experiences of both victimization and perpetration, and how living up to normative and hegemonic ideals of masculinity and ‘ability’ shape their experiences. It will include: identifying how gender and impairments intersect and shape their experiences of violence; identifying the contexts of and risks for violence; identifying the impacts and consequences of violence on their lives (including mental health impacts), and identifying obstacles and enablers to support and interventions to prevent violence. Methodology: In-depth qualitative interviews with 20 men with disabilities participating in interventions conducted by the What Works Global Programme for violence prevention (DIFD) in Africa and Asia. Men with a range of disabilities will be invited to share their lifetime experiences of violence. Implications for Practice: The data from this study will be used to start thinking about strategies to include men with disabilities in violence prevention strategies for both men and women. Limitations: Because men will be participating in interventions, it is assumed that they will not have severe impairments that hamper their cognitive or physical ability to participate in the intervention activities - and therefore will be able to participate in the in-depth interviews. Of course, this is a limitation of the study as it does not include those men with severe disabilities – measured by the World Health Organization’s International Classification of Functioning - who may be more vulnerable and at higher risk of experiencing violence, and who are less likely to be able to access services and interventions.

Keywords: gender, men with disabilities, perpetration of violence, victimization

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Authors: Stephen Bahooshy

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Our understanding of gender inequality has advanced in recent years. Differences in pay and societal gendered behaviour expectations have been emphasized. It is acknowledged globally that gender shapes everyone’s experiences of health and social care, including access to care, use of services and products, and the interaction with care providers. NHS Digital in England collects data from local authorities on the number of carers and people with support needs and the services they access. This data does not provide a gender breakdown. Caring can have many positive and negative impacts on carers’ health and wellbeing. For example, caring can improve physical health, provide a sense of pride and purpose, and reduced stress levels for those who undertake a caring role by choice. Negatives of caring include financial concerns, social isolation, a reduction in earnings, and not being recognized as a carer or involved and consulted by health and social care professionals. Treating male and female carers differently is by definition unequitable and precludes one gender from receiving the benefits of caring whilst potentially overburdening the other with the negatives of caring. In order to explore the issue on a preliminary basis, five local authorities who provide statutory adult social care services in England were sent Freedom of Information requests in 2019. The authorities were selected to include county councils and London boroughs. The authorities were asked to provide data on the amount of money spent on care at home packages to people over 65 years, broken down by gender and carer gender for each financial year between 2013 and 2019. Results indicated that in each financial year, female carers supporting someone over 65 years received less financial support for care at home support packages than male carers. Over the six-year period, this difference equated to a £9.5k deficit in financial support received on average per female carer when compared to male carers. An example of a London borough with the highest disparity presented an average weekly spend on care at home for people over 65 with a carer of £261.35 for male carers and £165.46 for female carers. Consequently, female carers in this borough received on average £95.89 less per week in care at home support than male carers. This highlights a real and potentially detrimental disparity in the care support received to female carers in order to support them to continue to care in parts of England. More research should be undertaken in this area to better explore this issue and to understand if these findings are unique to these social care providers or part of a wider phenomenon. NHS Digital should request local authorities collect data on gender in the same way that large employers in the United Kingdom are required by law to provide data on staff salaries by gender. People who allocate social care packages of support should consider the impact of gender when allocating support packages to people with support needs and who have carers to reduce any potential impact of gender bias on their decision-making.

Keywords: caregivers, carers, gender equality, social care

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Authors: Dorota Kobus-Ostrowska

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Work for everyone, especially for person with disability is a condition in independence; it secures basic needs and develops manual and intellectual capabilities. The work is a source of income, and it builds and strengthens of self-esteem and competence. The purpose of this article is to identify work as an important factor in everyone’s life, despite Polish disabled persons rarely having the chance to undertake a job. In order to achieve this purpose, two methods were used: comparative and qualitative. The theoretical part of this article is based on studies of a wide range of Polish and foreign literature devoted to the issue of the occupational development of people with disabilities. The article was also enriched with the institutional and legal analysis types of support for people with disabilities in Poland. Currently, a Polish person with disability who wants to enter or return to the labor market is under a special protection. Those entities employing workers with disabilities may obtain a subsidy for the salary of a person with disabilities. Unfortunately, people with disability in Poland rarely participate in the workforce. The factors that contribute to this include the difficulty in obtaining work, the uncertainty of keeping it, and the low salary offered. Despite that domestic and foreign literature highlight the important role of disabled people as a workforce, very few people with disability in Poland are economically active.

Keywords: disabled person, employer, rehabilitation, work

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Authors: Rosilyn Sanders

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This qualitative study examined the impact of hiring people with intellectual disabilities (ID). The research questions were: What defines a disability? What accommodations are needed to ensure the success of a person with a disability? As a leader, what benefits do people with intellectual disabilities bring to the organization? What are the benefits of hiring people with intellectual disabilities in retail organizations? Moreover, how might people with intellectual disabilities contribute to the organizational culture of retail organizations? A narrative strength approach was used as a theoretical framework to guide the discussion and uncover the benefits of hiring individuals with intellectual disabilities in various retail organizations. Using qualitative interviews, the following themes emerged: diversity and inclusion, accommodations, organizational culture, motivation, and customer service. These findings put to rest some negative stereotypes and perceptions of persons with ID as being unemployable or unable to perform tasks when employed, showing instead that persons with ID can work efficiently when given necessary work accommodations and support in an enabling organizational culture. All participants were recruited and selected through various forms of electronic communication via social media, email invitations, and phone; this was conducted through the methodology of snowball sampling with the following demographics: age, ethnicity, gender, number of years in retail, number of years in management, and number of direct reports. The sample population was employed in several retail organizations throughout Arkansas and Texas. The small sample size for qualitative research in this study helped the researcher develop, build, and maintain close relationships that encouraged participants to be forthcoming and honest with information (Clow & James, 2014 ). Participants were screened to ensure they met the researcher's study; and screened to ensure that they were over 18 years of age. Participants were asked if they recruit, interview, hire, and supervise individuals with intellectual disabilities. Individuals were given consent forms via email to indicate their interest in participating in this study. Due to COVID-19, all interviews were conducted via teleconferencing (Zoom or Microsoft Teams) that lasted approximately 1 hour, which were transcribed, coded for themes, and grouped based on similar responses. Further, the participants were not privy to the interview questions beforehand, and demographic questions were asked at the end, including questions concerning age, education level, and job status. Each participant was assigned random numbers using an app called ‘The Random Number Generator ‘to ensure that all personal or identifying information of participants were removed. Regarding data storage, all documentation was stored on a password-protected external drive, inclusive of consent forms, recordings, transcripts, and researcher notes.

Keywords: diversity, positive psychology, organizational development, leadership

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Authors: Adel S. Alanazi

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The transition of a student with a disability from school to work is the most crucial phase while moving from the stage of adolescence into early adulthood. In this process, young individuals face various difficulties and challenges in order to accomplish the next venture of life successfully. In this respect, this paper aims to examine the challenges encountered by the individuals with intellectual disabilities in transition to work in Saudi Arabia. For this purpose, this study has undertaken a qualitative research-based methodology; wherein interpretivist philosophy has been followed along with inductive approach and exploratory research design. The data for the research has been gathered with the help of semi-structured interviews, whose findings are analysed with the help of thematic analysis. Semi-structured interviews were conducted with parents of persons with intellectual disabilities, officials, supervisors and specialists of two vocational rehabilitation centres providing training to intellectually disabled students, in addition to that, directors of companies and websites in hiring those individuals. The total number of respondents for the interview was 15. The purposive sampling method was used to select the respondents for the interview. This sampling method is a non-probability sampling method which draws respondents from a known population and allows flexibility and suitability in selecting the participants for the study. The findings gathered from the interview revealed that the lack of awareness among their parents regarding the rights of their children who are intellectually disabled; the lack of adequate communication and coordination between various entities; concerns regarding their training and subsequent employment are the key difficulties experienced by the individuals with intellectual disabilities. Training in programmes such as bookbinding, carpentry, computing, agriculture, electricity and telephone exchange operations were involved as key training programmes. The findings of this study also revealed that information technology and media were playing a significant role in smoothing the transition to employment of individuals with intellectual disabilities. Furthermore, religious and cultural attitudes have been identified to be restricted for people with such disabilities in seeking advantages from job opportunities. On the basis of these findings, it can be implied that the information gathered through this study will serve to be highly beneficial for Saudi Arabian schools/ rehabilitation centres for individuals with intellectual disability to facilitate them in overcoming the problems they encounter during the transition to work.

Keywords: intellectual disability, transition services, rehabilitation centre, employment

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Authors: Nadia Arikat, Katharine Blain

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During the worst of the COVID pandemic, only essential treatment was provided for patients needing urgent care. With the prolonged extent of the pandemic, there has been a return to more routine referrals for paediatric dentistry advice and treatment for specialist conditions. However, some of these patients and/or their carers may have significant medical issues meaning that attending in-person appointments carries additional risks. This poses an ethical dilemma for clinicians. This project looks at how a secure video conferencing platform (“Near Me”) has been used to assess the need and urgency for in-person new patient visits, particularly for patients and families with additional risks. “Near Me” is a secure online video consulting service used by NHS Scotland. In deciding whether to bring a new patient to the hospital for an appointment, the clinical condition of the teeth together with the urgency for treatment need to be assessed. This is not always apparent from the referral letter. In addition, it is important to judge the risks to the patients and carers of such visits, particularly if they have medical issues. The use and effectiveness of “Near Me” consultations to help decide whether vulnerable paediatric patients should have in-person appointments will be illustrated and discussed using two families: one where the child is medically compromised (Alagille syndrome with previous liver transplant), and the other where there is a medically compromised parent (undergoing chemotherapy and a bone marrow transplant). In both cases, it was necessary to take into consideration the risks and moral implications of requesting that they attend the dental hospital during a pandemic. The option of remote consultation allowed further clinical information to be evaluated and the families take part in the decision-making process about whether and when such visits should be scheduled. These cases will demonstrate how medically compromised patients (or patients with vulnerable carers), could have their dental needs assessed in a socially distanced manner by video consultation. Together, the clinician and the patient’s family can weigh up the risks, with regards to COVID-19, of attending for in-person appointments against the benefit of having treatment. This is particularly important for new paediatric patients who have not yet had a formal assessment. The limitations of this technology will also be discussed. It is limited by internet availability, the strength of the connection, the video quality and families owning a device which allows video calls. For those from a lower socio-economic background or living in some rural areas, this may not be possible or limit its usefulness. For the two patients discussed in this project, where the urgency of their dental condition was unclear, video consultation proved beneficial in deciding an appropriate outcome and preventing unnecessary exposure of vulnerable people to a hospital environment during a pandemic, demonstrating the usefulness of such technology when it is used appropriately.

Keywords: COVID-19, paediatrics, triage, video consultations

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Authors: Margarida Maria Cabugueira Csutódio dos Santos, Joana Filipa Pintéus Pereira

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The way children understand the concept of health and illness influences their reaction in contexts where these concepts are present (e.g.,illness; vaccination). The recognition of the importance of children's beliefs/representations about health and disease has led to the development of models that seek to explain the development process of these concepts. In the construction of their representations, children are influenced not only by their cognitive competence but also by their life experiences. In the last 3 years, children have experienced a pandemic health crisis that has exposed them to anomalous and stressful situations. Objective: the aim of this study was (1) to identify children’s representations about disease (including symptoms, causes, control/treatment) and prevention (including health procedures and vaccines) and (2) whether COVID19 is mentioned and influences their representations. Methodology: a qualitative study in which 67 children with 7 to 10 years old (mean 8,8) participated. A semi-structured interview was used following the Bibace and Walsh model, focusing on the representation of the disease and its prevention. Results show a marked influence of the lived experience with regard to causes of the disease, disease control and treatment, and adherence to vaccination. Age-dependent differences were found with older children being able to talk about illness and contamination process and younger displaying more basic, concrete and rigid representations. Conclusions: The results of this study bring clues to the adequacy of communication with the child in the context of health and illness and discriminately in a future health pandemic crisis.

Keywords: childen, health beliefs, pediatrics, covid19, vaccines

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Authors: James Boag

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The needs of people with a diagnosis of dementia and their carers and families are physical, psychosocial, and psychological and begin at the time of diagnosis. There is frequently a lack of emotional support and counselling. Care- giving support is required from the presentation of the first symptoms of dementia until death. Alzheimer's disease begins decades before the clinical symptoms begin to appear, and in many cases, it remains undiagnosed, or diagnosed too late for any possible interventions to have any effect. However, if an incorrect diagnosis is given, it may result in a person being treated, without effect, for a type of dementia they do not have and delaying the interventions they should have received. Being diagnosed with dementia can cause emotional distress to the person, and physical and emotional support is needed, which will become more important as the disease progresses. The severity of the patient's dementia and their symptoms has a bearing of the impact on the carer and the support needed. A lack of insight and /or a denial of the diagnosis, grief, reacting to anticipated future losses, and coping methods to maximise the disease outcome, are things that should be addressed. Because of the stigma, it is important for carers not to lose contact with family and others because social isolation leads to depression and burnout. The impact on a carer's well- being and quality of life can be influenced by the severity of the illness, its type of dementia, its symptoms, healthcare support, financial and social status, career, age, health, residential setting, and relationship to the patient. Carer burnout due to lack of support leads to people diagnosed with dementia being put into residential care prematurely. Often dementia is not recognised as a terminal illness, limiting the ability of the person diagnosed with dementia and their carers to work on advance care planning and getting access to palliative and other support. Many carers have been satisfied with the physical support they were given in their everyday life, however, it was agreed that there was an immense unmet need for psychosocial support, especially after diagnosis and approaching end of life. Providing continuity and coordination of care is important. Training is necessary for providers to understand that every case is different, and they should understand the complexities. Grief, the emotional response to loss, is suffered during the progression of the disease and long afterwards, and carers should continue to be supported after the death of the person they were caring for.

Keywords: dementia, caring, challenges, needs

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Authors: Si On Na

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The development of American radio and print media since World War II has allowed people with disabilities to engage more directly with the public, gradually changing the perception that disabled people constitute a kind of social impairment or burden. People with disabilities have rarely been portrayed as equal to the non-disabled. In the postwar period, a dramatic shift from eugenicist conceptualizations of disability and widespread institutionalization gradually evolved into conditions of greater openness in public discourse. This discourse was marked at mid-century by telethons and news media (both print and television) which sought to commodify people with disabilities for commercial gain through stories that promoted alienating forms of empowerment alternating with paternalistic pity. By comparing studies of the history of American disability advocacy in the twentieth century and the evolution of the image of disability characteristic of mid-century media discourse, this paper will examine the relationship between the passage of the American with Disabilities Act of 1990 (ADA) and the expanded media representation of people with disabilities. This paper will argue that the legal mandate of the ADA ultimately transformed the image of people with disabilities from those who are weak and in need of support to viable consumers, encouraging traditional American print, film, and television media outlets to solicit the agency of people with disabilities in the authentic portrayal of themselves and their disabilities.

Keywords: ADA, disability representation, media portrayal, postwar United States

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Authors: Jakyoung Kim, Sungwook Jang

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The purpose of this study is to examine the research trends of life-long education for people with disabilities using a keyword network analysis. For this purpose, 151 papers were selected from 594 papers retrieved using keywords such as 'people with disabilities' and 'life-long education' in the Korean Education and Research Information Service. The Keyword network analysis was constructed by extracting and coding the keyword used in the title of the selected papers. The frequency of the extracted keywords, the centrality of degree, and betweenness was analyzed by the keyword network. The results of the keyword network analysis are as follows. First, the main keywords that appeared frequently in the study of life-long education for people with disabilities were 'people with disabilities', 'life-long education', 'developmental disabilities', 'current situations', 'development'. The research trends of life-long education for people with disabilities are focused on the current status of the life-long education and the program development. Second, the keyword network analysis and visualization showed that the keywords with high frequency of occurrences also generally have high degree centrality and betweenness centrality. In terms of the keyword network diagram, it was confirmed that research trends of life-long education for people with disabilities are centered on six prominent keywords. Based on these results, it was discussed that life-long education for people with disabilities in the future needs to expand the subjects and the supporting areas of the life-long education, and the research needs to be further expanded into more detailed and specific areas. 

Keywords: life-long education, people with disabilities, research trends, keyword network analysis

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Authors: Waleed Alanzi

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The purpose of this qualitative study was to add to the existing literature and provide a more detailed understanding of the individual experiences and perceptions of 15 Deans at the University of Kuwait regarding their first year of planning, developing, and implementing crisis distance education (CDE) in response to the COVID-19 epidemic. An interpretative phenomenological approach was applied, using the thematic analysis of interview transcripts to describe the challenging journeys taken by each of the Deans from the first-person point of view. There was objective evidence, manifested by four primary themes (“Obstacles to the implementation of CDE”; “Planning for CDE”; “Training for CDE,” and “Future Directions”) to conclude that the faculty members, technical staff, administrative staff, and students generally helped each other to overcome the obstacles associated with planning and implementing CDE. The idea that CDE may turn homes into schools and parents into teachers was supported. The planning and implementation of CDE were inevitably associated with a certain amount of confusion, as well as disruptions in the daily routines of staff and students, as well as significant changes in their responsibilities. There were contradictory ideas about the future directions of distance education after the pandemic. Previous qualitative research on the implementation of CDE at higher education institutions in the Arab world has focused mainly on the experiences and perceptions of students; however, little is known about the experiences and perceptions of the students at the University of Kuwait during the COVID19 pandemic, providing a rationale and direction for future research.

Keywords: distance learning, qualitative research, COVID-19 epidemic, Kuwait university

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Authors: Mariana Calderón, Rocío Murad, Natalia Acevedo, Laura León, Juliana Fonseca, Maria de los Angeles Balaguera Villa

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Recently, different countries and international organizations have put on their agenda the elimination of violence against people with disabilities. This research aims to evaluate the social dimensions of sexual violence against people with disabilities, particularly those with psychosocial and cognitive, in Colombia. Results reveal that 55% of people with disabilities that are survivors of sexual violence are younger than 29 years and 20,4 are people with cognitive and psychosocial disabilities. Colombian regions with better social positions presented more cases of sexual violence against people with disabilities. There were found access barriers for health, education and employment among this population, and there was also found poor data quality. Despite Colombia having an important normative framework aimed at preventing and attending to gender-based violence, it does not take into account people with disabilities specific needs. Additionally, it was found an insufficient implementation and appropriation of these norms, negative attitudes, and in general, a lack of service adaptation according to the needs, identities and circumstances of people with disabilities. Furthermore, among the factors that are exposing people with disabilities to sexual violence, it was found that family members tend to be the main aggressors, there are deep gaps in the sex education received by people with disabilities, imaginaries and perceptions about their sexuality are both hypersexualizing and presenting them as asexual. On the other hand, among protective factors, there were found body self-knowledge and conscience, acknowledgment of their sexuality and their sexual and reproductive rights and access to sex ed. Although during the last few years, there has occurred a positive change toward social inclusion of people with disabilities, specifically through their role in the political agenda and the recognition of their rights. More work is needed in order to guarantee their sexual and reproductive rights, particularly for persons with psychosocial and cognitive disabilities. This research results showed the importance of transforming persisting negative imaginaries about their sexuality and also enforcing and promoting their autonomy. In this sense, it is important to acknowledge gaps and barriers faced by them and create strategies to encourage their social inclusion through education, employment, and skill development. Nevertheless, it is necessary to keep contributing new evidence of the social determinants of health that are influencing the occurrence of sexual violence. This research understands sexual violence against people with disabilities in a multidimensional manner and offers the following recommendations: 1- To foment public sensitization and understanding of disabilities. 2- To increase parents, caregivers and officers’ commitment to the prevention and reduction of sexual violence. 3- To focus on the needs, identities and circumstances of people with disabilities.

Keywords: disabilities, sexual and reproductive rights, sexual violence, prevention

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Authors: Cate MacMillan, Nicholas J. Stevens, Johanna Rosier, Steven Boyd

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Choosing where to live is an important decision for anybody, however, this decision is more complex if you are an adult with intellectual disability. Our research asked adults with intellectual disability, parents and carers and disability, housing and built environment decision makers what they considered important in deciding where to live. If medical advances continue to improve the longevity of adults with intellectual disability, many of these adults will outlive their parents. With appropriate community support, and in appropriately designed neighbourhoods, many will be able to live independently. Our research suggests that the key to achieving independent living as an adult with intellectual disability is not so much about the house but the type of neighbourhood and its design. This paper presents the results of interviews and details a practical approach which will better inform urban development decision-makers in establishing safe, inclusive and accessible neighbourhood design.

Keywords: inclusion, independent living, intellectual disability, neighbourhoods, systems thinking, urban design and planning

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Authors: Begum Serim-Yildiz

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The aim of this study is to examine the role of parents' emotional and behavioral reactions on fears of children in the COVID-19 pandemic considering Rachman’s Three Pathways Theory. For this purpose, a phenomenological qualitative study was conducted. Thirteen participants living with their children were utilized through criterion and snowball sampling. In semi-structured interviews parents were asked about their own and their children’s beahavioral and emotional reactions in the COVID-19 pandemic, and they were expected to give detailed information about fears of their children before and in pandemic. Firstly, parents were asked about their behavioral and emotional reactions in the COVID-19 pandemic. As behavioral reactions, precautions taken by parents to protect the rest of the family from negative physical and emotional impact of the pandemic were mentioned, while emotional reactions were defined as acquisition of negative emotions like fear, anxiety, and worry. Secondly, parents were asked about their children’s behavioral and emotional reactions. Some of the parents talked about positive behavioral changes such as gaining self-control, while some others explained negative behavioral changes like increased time spent with technological tools. In the emotional changes section, all of the parents explained at least one negative emotion. All of the parents stated that their children had COVID-19 related fears. According to parents’ expressions, fears of children in pandemic were examined in two dimensions. Fears directly related to COVID-19 were fear of virus/microbes, illness or death of someone in family and death and fears. Fears indirectly related to COVID-19 were fear of going out, sleep alone at night, separation, touching stuff outside the home, and cold. Considering existing literature and based on the findings of this study, it can be concluded that children’s modelling experiences have impact on acquisition of negative emotions, especially fear, therefore, preventive interventions involving caregivers should be provided by mental health professionals working with children.

Keywords: children’s fears, COVID-19 pandemic, modelling experiences, parents’ reactions

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Authors: Jane E. Souyave, Judith Bower

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This study is an ongoing collaborative project between the University of Central Lancashire and the Alzheimer’s Society to design and test the idea of using interactive tools for a person living with dementia and their carers. It is hoped that the tools will fulfill the possible needs of engagement and interaction as dementia progresses, therefore enhancing wellbeing and improving quality of life for the person with dementia and their carers. The project was informed by Kitwood’s five psychological needs for producing wellbeing and explored evidence that fidgeting is often seen as a form of agitation and a negative symptom of dementia. Although therapy for agitation may be well established, there is a lack of appropriate items aimed at people in the later stage of dementia, that are not childlike or medical in their aesthetic. Individuals may fidget in a particular way and the tools in the Fidget Widget Toolkit have been designed to encourage repetitive movements of the hand, specifically to address the abilities of people with relatively advanced dementia. As an intervention, these tools provided a new approach that had not been tested in dementia care. Prototypes were created through an iterative design process and tested with a number of people with dementia and their carers, using quantitative and qualitative methods. Dementia Care Mapping was used to evaluate the impact of the intervention in group settings. Cohen Mansfield’s Agitation Inventory was used to record the daily use and interest of the intervention for people in their usual place of residence. The results informed the design of a new set of devices to promote safe, stigma free fidgeting as a positive experience, meaningful activity and enhance wellbeing for people in the later stage of dementia. The outcomes addressed the needs of individuals by reducing agitation and restlessness through helping them to connect, engage and act independently, providing the means of doing something for themselves that they were able to do. The next stage will be to explore the commercial feasibility of the Fidget Widget Toolkit so that it can be introduced as good practice and innovation in dementia care. It could be used by care homes, with carers and their families to support wellbeing and lead the way in providing some positive experiences and person-centred approaches that are lacking in the later stage of dementia.

Keywords: dementia, design, fidgeting, healthcare, positive moments, quality of life, wellbeing

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Authors: Supranee Sittikan, Darunee Jongudomkarn, Rutja Phuphaibul

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Thai’s families with disabilities are diverse, poor economy, low education disproportionately characterized their living that includes stress and suffering. This article reports a preliminary study using a qualitative case study with six disabilities (five physical and one mental problem) Their six family caregivers who perceived they were managing well with their conditions as well. Data were collected by in-depth interviews during November-December 2017 in North-East of Thailand. Preliminary results were found factors of moving in comprised of three themes as followings Karma: the families believe that the disability happened because of bad-karma which attached to them. From the reason, the members of families have to deserve and accept it. Family attachment: the families believe in the importance of being the family so they have to take good care in one another whether happy or suffering Community support: the families can get more to received helping hands from local health care providers and community health volunteers. These activities are very important to be representative in taking the families through health accessibility, which help them face with disabling problems. Nevertheless, the study needs further exploring on other families’ and health care team's perspective in larger scales leading to develop an appropriate health care service system which can support and promote the well-being of the families living with disabilities in the future.

Keywords: families with disabilities, Karma, family attachment, community support

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Authors: Jayanti Pujari

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The present study attempts to find out the barriers faced by adult women with an Intellectual disability during their training at vocational training centres offered by rehabilitation institutes. As economic independence is the ultimate aim of rehabilitation, this study tries to focus on the barriers which restrict the adult women with intellectual disability in equipping themselves in required skill which can really empower them and help them in independent living. The objectives of the study are (1) To find out the barriers perceived by job coaches during training given to women with intellectual disability (2) To find out the barriers perceived by the parents of women with intellectual disability who are undergoing vocational training and (3) To find out the barriers perceived by the women with intellectual disabilities during the vocational training. The barriers have been operationalised in the present study from three perspectives such as behavioural barriers, competency related barriers and accessibility barriers. For the present study three groups of participants(N=60) have been selected through purposive nonprobability sampling procedure to generate the data. They are( 20) job coaches who are working at vocational centres, (20) parents of women with intellectual disabilities, (20) adult women with intellectual disabilities. The study followed a descriptive research design and data are generated through self developed questionnaire. Three sets of self-developed and face validated questionnaires were used as the tool to gather the data from the three categories of sample. The questionnaire has 30 close ended questions and the respondents have to answer on a three point scale (yes, no, need help). Both qualitative and quantitative analysis was conducted to test the hypothesis. The major findings of the study depict that the 87% of the women with intellectual disability perceived highest barriers related to competency whereas barriers related to behaviour and accessibility are perceived lowest. 92% of job coaches perceived barriers related to competencies and accessibility are highest which hinder the effectiveness of skill development of women with intellectual disability and 74% of the parents of adult women with intellectual disability also opines that the barriers related to competencies and accessibility are highest. In conclusion, it is stressed that there is need to create awareness among the stakeholders about the training and management strategies of skill training and positive behaviour support which will surely enable the adult women with intellectual disability to utilise their residual skill and acquire training to become economically independent.

Keywords: economic independence, intellectual disability, skill development, training barrier

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Authors: Adnan Alhazmi

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Background: UDL can be understood as a framework that holds the potential to elaborate the alternatives and platforms for the students with intellectual disabilities within general education settings and aims at offering flexible pathways that can support all the students in gaining a mastering over the goals of learning. This system of learning addresses the problem of the variability of the learner by delineating the diverse ways in which the individuals can understand, conceive, express and deal with the information. Goal: The aim of the proposed research is to examine the impact of the implementation of UDL in teaching practices for the students with intellectual disabilities in Saudi Arabian schools. Method: This research has used a combination of quantitative and qualitative designs. Survey questionnaires were used to gather the data for under this analytical descriptive method. The application of the qualitative interpretive approach was applied with the help of the interview to gather a detailed understanding on the aim of the research. For this purpose, the semi-structured interviews were conducted. Thus, the primary data will be gathered with the help of survey and interview to examine the impact of universal design learning implementation on teaching practices for intellectually disabled students in Saudi Arabian schools. The survey was conducted to examine the prevailing teaching practices for the students with intellectual disabilities in Saudi Arabia and evaluate if the teaching experience influences the current practices or not. The surveys were distributed to 50 teachers who teach the students with intellectual disabilities. However, the interviews were conducted to explore barriers of implementing UDL in Saudi Arabia and provide suggested guideline for the implementation of UDL in Saudi Arabia. The interviews, therefore, were with 10 teachers teaching the same subject. Findings: A key findings highlighted in this study revealed that the UDL framework serves as a crucial guide for teachers within inclusive settings to undertake meaningful planning for the individuals with intellectual disabilities so that they are able to access, participate, and grow within the general education curriculum. Other findings of the study highlighted the need to prepare the educators and all faculty members to understand the purpose and need for inclusion, the UDL framework so that better information about academic and social expectations for individuals with intellectual disabilities can be delivered. Conclusion: On the basis of the preliminary study undertaken on the subject of research, it could be suggested that UDL can serve to be an effective support for undertaking a meaningful inclusion of students with intellectual disability (ID) in general educational settings. It holds the potential role of working as an institutional design framework that could be used for designing curriculum for students with intellectual disabilities.

Keywords: intellectual disability, inclusion, universal design for learning, teaching practice

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