Search results for: people with disability

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: M. Abdul Jalil

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Parents caring for a child with a profound disability encounter different experiences compared to the parents caring for a child without a disability. The aim of this paper is to develop a greater understanding of parenting of a child with profound disabilities in the context of developing countries with reference to Bangladesh. The paper reveals that parents caring for a child with a profound disability are experiencing increased financial burden, affiliate and courtesy stigma and negative impact on mothers in terms of additional caregiving role, instability of conjugal relations, giving up of involvement in economic activities, and shrinking kinship and social relationships. In addition, government and non-government services for children with disabilities are very limited. Moreover, the information about the services is also not available to the parents. Therefore, parents find it difficult to cope with the challenges that lead to the alienation of the parents. The paper recommended the strategies to address the issues in the context of Bangladesh, which in turn might be applicable to the developing countries as well.

Keywords: caregiving, coping, parenting, profound disability

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Authors: Fines Fatimah, SH. MH.

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Indonesia is one of the countries that has ratified the UNCRPD (United Nations Convention on the Rights of Persons with Disabilities). The ratification of this convention brings consequences on the adjustment of national legislation with the UNCRPD convention, where this ratification at the same time is a measure in the eyes of the international community that a state party could be consistent with the issues and problems of disability. Persons with disabilities often have little access to justice when they are forced to deal with the criminal justice system. Pursuit of justice through litigation are often not in their favor, therefore without any awareness of law enforcement/awareness of disability will further complicate access to justice for persons with disabilities. Under Article 13 of the UNCRPD, it appeared that the convention requires ratifying states to guarantee equal opportunity and treatment in justice for persons with disabilities. The States should also ensure that any judicial rules must be adapted to the circumstances of persons with disabilities so that people with disabilities can fully participate in all stages of the trial court and, for example, as a witness. Finally, the state must provide training to understand these persons with disabilities (for those who work in the judiciary institution such as police or prison officials). Further, this paper aims to describe problem faced by persons with intellectual disabilities to access justice in Indonesian Criminal Justice System. This paper tries to find and propose the alternative solutions to promote the quality of law enforcement in Indonesia, especially for persons with intellectual disabilities.

Keywords: access to justice, Indonesian criminal justice system, intellectual disability, ratifying states

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Authors: Khalid Alasim

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This study investigates the attitudes of faculty members at Prince Sattam bin Abdulaziz University toward integrating students with disabilities. Additionally, this research examines the possible factors that might affect faculty members’ attitudes about the inclusion of students with disability; the factors include occupation, gender, college, the country in which the certificate was obtained, years of experience, previous experience in teaching students with disabilities, the presence of a family member with a disability, attending a program on teaching students with disabilities. The researcher used a survey to collect data and the study sample consisted of 102 faculty members at the university. The findings indicated an increase in the attitudes of faculty members at Prince Sattam bin Abdulaziz University towards the inclusion of students with disabilities in the university, while there is no effect for all study independents variables on the attitudes of faculty members, and there is no interaction between the variables as well. The study concluded with the importance of training and preparing faculty members to teach and deal with students with disabilities at the university level.

Keywords: attitutes, inclusion, disability, faculty members

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Authors: Vedat Kurt, Tansel Koyunoglu, Gamze Kurt, Ozgen Aras

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Low back pain is one of the most common health problem in public. Common symptoms that can be associated with low back pain include; pain, functional disability, gait disturbances. The aim of the study was to investigate the differences between disability scores and gait parameters in subjects with low back pain. Sixty participants are included in our study, (35 men, 25 women, mean age: 37.65±10.02 years). Demographic characteristics of participants were recorded. Pain (visual analog scale) and disability level (Oswestry Disability Index(ODI)) were evaluated. Gait parameters were measured with Zebris-FDM-2 platform. Independent samples t-test was used to analyse the differences between subjects with under 40 points (n=31, mean age:35.8±11.3) and above 40 points (n=29, mean age:39.6±8.1) of ODI scores. Significant level in statistical analysis was accepted as 0.05. There was no significant difference between the ODI scores and groups’ ages. Statistically significant differences were found in step width between subjects with under 40 points of ODI and above 40 points of ODI score(p < 0.05). But there were non-significant differences with other gait parameters (p > 0.05). The differences between gait parameters and pain scores were not statistically significant (p > 0.05). Researchers generally agree that individuals with LBP walk slower and take shorter steps and have asymmetric step lengths when compared with than their age-matched pain-free counterparts. Also perceived general disability may have moderate correlation with walking performance. In the current study, the patients classified as minimal/moderate and severe disability level by using ODI scores. As a result, a patient with LBP who have higher disability level tends to increase support surface. On the other hand, we did not find any relation between pain intensity and gait parameters. It may be caused by the classification system of pain scores. Additional research is needed to investigate the effects of functionality level and pain intensity on gait in subjects with low back pain under different classification types.

Keywords: functionality, low back pain, gait, pain

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Authors: Michael Stokes

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Using a disability studies approach, this paper analyzes the American science fiction novel Ballroom of the Skies as way to address and access narratives of American exceptionalism in relation to global struggle. Combined with a critical race studies analysis of identity and cultural practice, this essay seeks to find parallels between the treatment of disability and the treatment of the racialized body in literature to forcibly reread potential for multiple assemblages of identity in the speculated futures of science fiction. Thinking through this relationship, the essay constructs a thematic understanding of social eugenics as practiced in American culture.

Keywords: disability studies, science fiction, eugenics, cultural studies

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Authors: Leoni Van Der Merwe

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Historically, in South Africa, disability has been viewed as a dilemma of the individual. The discourse surrounding the definition of disability and applicable theories are as fluid as the differing needs of persons with disabilities within society. In 1997, the Office of the Deputy President published the White Paper on the Integrated National Disability Strategy (WPINDS) which sought to integrate disability issues in all governmental development strategies, planning and programs as well as to solidify the South African government’s stance that disability was to be considered according to the social model and not the, previously utilized, medical model of disability. The models of disability are conceptual frameworks for understanding disability and can provide some insight into why certain attitudes exist and how they are reinforced in society. Although the WPINDS was regarded as a critical milestone in the history of the disability rights struggle in South Africa; it has taken approximately twenty years for the publication of a similar document taking into account South Africa’s changing social, economic, political and technological dispensation. December 2015 marked the approval of the White Paper on the Rights of Persons with Disabilities (WPRPD) which seeks to update the WPINDS, integrate principles contained in international law instruments and endorse a mainstreaming trajectory for realizing the rights of persons with disabilities. While the WPINDS and the WPRPD were published two decades apart, both documents contain an emphasis on a transition from the medical model to the social model. Whereas, the medical model presupposes that disability is mainly a health and welfare matter and is focused on an individualistic and dependency-based approach; the social model requires a paradigm shift in the manner in which disability is constructed so as to highlight the shortcomings of society in respect of disability and to bring to the fore the capabilities of persons with disabilities. The social model has led to unmatched success in changing the perceptions surrounding disability. This article seeks to investigate the progress made in the implementation of the social model in South Africa by taking into account the effect of the diverse political and cultural landscape in promoting the historically entrenched medical model and the rise of disability activism prior to the new democratic dispensation as well as legislation, case law, policy documents and barriers in respect of persons with disabilities that are pervasive in South African society. The research paper will conclude that although numerous interventions have been identified and implemented to promote the consideration of disability within a social construct in South Africa, such interventions require increased national and international collaboration, resources and pace to ensure that the efforts made lead to sustainable results. For persons with disabilities, what remains to be seen is whether the proliferation of activism by interest groups, social awareness as well as the development of policy documents, legislation and case law will serve as the impetus to dissipate the view that disability is burden to be carried solely on the shoulders of the person with the disability.

Keywords: disability, medical model, social model, societal barriers, South Africa

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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: Kaycee L. Bills

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Adolescents and youth who are members of a minority group are more likely to experience higher rates of bullying in comparison to other student demographics. Specifically, adolescents with intellectual disabilities are a minority population that is more susceptible to experience unfair treatment in social settings. This study employs the 2015 Wave of the National Crime Victimization Survey – School Crime Supplement (NCVS/SCS) longitudinal dataset to explore bullying rates experienced among adolescents with intellectual disabilities. This study uses chi-square testing and a logistic regression to analyze if having a disability influences the likelihood of being bullied in comparison to other student demographics. Results of the chi-square testing and the logistic regression indicate that adolescent students who were identified as having a disability were approximately four times more likely to experience higher bullying rates in comparison to all other majority and minority student populations. Thus, it means having a disability resulted in higher bullying rates in comparison to all student groups.

Keywords: disability, bullying, social work, school bullying

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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: Hui-Chi Huang, Su-Ju Yang, Ching-Wei Lin, Jui-Yao Tsai, Liang-Yiang

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Background: Evidence exists that pneumonia is a frequently encountered complication after stroke which is associated with a higher rate of mortality and increased long-term disability Purpose: To determine the predictors associated with the risk of one-year disability in acute stroke. Methods: Data for this longitudinal follow-up study were extracted from a tertiary referral medical center’s stroke registry database in Northern Taipei. Eligible patients with acute stroke admitted to the hospital and completed a one-year follow up were recruited for analysis. Favorable outcome was defined as a modified Rankin Scale score ≤ 2. SAS version 9.2 was used for the multivariable regression analyses to examine the factors correlated with the one-year disability in stroke patients. Results: From January 2012 to December 2013, a total of 1373 (mean age: 70.49±15.4 years, 913(66.5%) males) consecutively administered acute stroke patients were recruited. Overall, the rate of one-year disability was 37.20%(404/1086) in those without post-stroke pneumonia. It increased to 82.93 %(238/287) in patients developed post-stroke pneumonia. Factors associated with increased risk of disability were age ≧ 75(OR= 4.845, p<.0001), female /gender (OR=1.568, p =.0062), previous stroke (OR= 1.868, p = <. 0001) ,dementia (OR= 2.872, p =.0047), ventilator use (OR= 4.653, p <. 0001),age ≧ 75 /pneumonia (OR=1.236, p <. 0001) , ICU admission (OR=3.314, p <.0001) , nasogastric tube insertion (OR= 4.28, p <.0001), speech therapy (OR= 1.79, p =.0142), urinary tract infection (OR= 1.865, p =.0018), estimated glomerular filtration rate (eGFR > 60 )(OR= 0.525, p= .0029), Admission NIHSS >11 (OR= 2.101, p = .0099), Length of hospitalization > 30(d) (OR= 5.182, p <.0001). Conclusion: Older age, severe neurological deficit, complications, rehabilitation intervention, length of hospitalization >30(d), and cognitive impairment were significantly associated with Post-stroke functional impairment, especially those with post-stroke pneumonia. These findings could open new avenues in the management of stroke patients.

Keywords: stroke, risk, pneumonia, disability

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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: Scott Hollier, Ruchi Permvattana

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The purpose of this abstract is to share the findings of a recently completed disability-related Internet of Things (IoT) project undertaken at Curtin University in Australia. The project focused on identifying how IoT could support people with disabilities with their educational outcomes. To achieve this, the research consisted of an analysis of current literature and interviews conducted with students with vision, hearing, mobility and print disabilities. While the research acknowledged the ability to collect data with IoT is now a fairly common occurrence, its benefits and applicability still need to be grounded back into real-world applications. Furthermore, it is important to consider if there are sections of our society that may benefit from these developments and if those benefits are being fully realised in a rush by large companies to achieve IoT dominance for their particular product or digital ecosystem. In this context, it is important to consider a group which, to our knowledge, has had little specific mainstream focus in the IoT area –people with disabilities. For people with disabilities, the ability for every device to interact with us and with each other has the potential to yield significant benefits. In terms of engagement, the arrival of smart appliances is already offering benefits such as the ability for a person in a wheelchair to give verbal commands to an IoT-enabled washing machine if the buttons are out of reach, or for a blind person to receive a notification on a smartphone when dinner has finished cooking in an IoT-enabled microwave. With clear benefits of IoT being identified for people with disabilities, it is important to also identify what implications there are for education. With higher education being a critical pathway for many people with disabilities in finding employment, the question as to whether such technologies can support the educational outcomes of people with disabilities was what ultimately led to this research project. This research will discuss several significant findings that have emerged from the research in relation to how consumer-based IoT can be used in the classroom to support the learning needs of students with disabilities, how industrial-based IoT sensors and actuators can be used to monitor and improve the real-time learning outcomes for the delivery of lectures and student engagement, and a proposed method for students to gain more control over their learning environment. The findings shared in this presentation are likely to have significant implications for the use of IoT in the classroom through the implementation of affordable and accessible IoT solutions and will provide guidance as to how policies can be developed as the implications of both benefits and risks continue to be considered by educators.

Keywords: disability, higher education, internet of things, students

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Authors: Zakaria Elkhwesky, Islam E. Salem, Mona Barakat

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The purpose of this study is to analyze the importance of disability management practices (DMPs) and the level of implementation from viewpoints of food and beverage (F & B) managers, F and B entry-level employees, working in F & B departments, and human resources (HRs) managers in five-star hotels in Egypt. It also examined the moderating effect of team orientation (TO) between the importance and the implementation. Data were collected from 400 participants. The correlation proved to be significant, moderate, and positive between the importance and the implementation of DMPs. More, the findings revealed that the relationship between the importance and the implementation is significantly more positive under the condition of a high encouragement of TO.

Keywords: disability management practices, diversity management, team orientation, HR management, hospitality, and tourism operations

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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: Stephanie Giordano, Rosa Plasencia

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In the USA, in 2013, public service systems such as Medicaid, aging, and disability systems undertook an effort to measure the quality of service delivery by examining the experiences and outcomes of those receiving public services. The goal of this effort was to develop a survey to measure the experiences and outcomes of those receiving public services, with the goal of measuring system performance for quality improvement. The performance indicators were developed through with input from directors of state aging and disability service systems, along with experts and stakeholders in the field across the United States. This effort, National Core Indicators –Aging and Disabilities (NCI-AD), grew out of National Core Indicators –Intellectual and Developmental Disabilities, an effort to measure developmental disability (DD) systems across the States. The survey tool and administration protocol underwent multiple rounds of testing and revision between 2013 and 2015. The measures in the final tool – called the Adult Consumer Survey (ACS) – emphasize not just important indicators of healthcare access and personal safety but also includes indicators of system quality based on person-centered outcomes. These measures indicate whether service systems support older adults and people with disabilities to live where they want, maintain relationships and engage in their communities and have choice and control in their everyday lives. Launched in 2015, the NCI-AD Adult Consumer Survey is now used in 23 states in the US. Surveys are conducted by NCI-AD trained surveyors via direct conversation with a person receiving public long-term services and supports (LTSS). Until 2020, surveys were only conducted in person. However, after a pilot to test the reliability of videoconference and telephone survey modes, these modes were adopted as an acceptable practice. The nature of the survey is that of a “guided conversation” survey administration allows for surveyor to use wording and terminology that is best understand by the person surveyed. The survey includes a subset of questions that may be answered by a proxy respondent who knows the person well if the person is receiving services in unable to provide valid responses on their own. Surveyors undergo a standardized training on survey administration to ensure the fidelity of survey administration. In addition to the main survey section, a Background Information section collects data on personal and service-related characteristics of the person receiving services; these data are typically collected through state administrative record. This information is helps provide greater context around the characteristics of people receiving services. It has also been used in conjunction with outcomes measures to look at disparity (including by race and ethnicity, gender, disability, and living arrangements). These measures of quality are critical for public service delivery systems to understand the unique needs of the population of older adults and improving the lives of older adults as well as people with disabilities. Participating states may use these data to identify areas for quality improvement within their service delivery systems, to advocate for specific policy change, and to better understand the experiences of specific populations of people served.

Keywords: quality of life, long term services and supports, person-centered practices, aging and disability research, survey methodology

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Authors: Olga Muries-Cantan, Alice Schippers, Climent Gine, Noelle van den Heuvel

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A systematic review of the literature about the quality of life perceptions of siblings of people with intellectual and developmental disabilities (ID/DD) has shown differences and similarities among siblings’ perceptions around the world. Some of these differences might be explained by the influence of cultural and religious backgrounds on siblings’ quality of life through values, beliefs, and perceptions of ‘normalcy’ and stigma. The main goal of the multiple case study that we present, is to explore the quality of life perceptions of two adolescent siblings of individuals with ID/DD in order to identify the role cultural influence has played in their perceptions of quality of life. Two siblings from different European regions will participate in the study: one from a Southern European country (Spain) and the other one from a Western European country (The Netherlands). Taking a cross-cultural perspective, concepts such as values, cultural beliefs regarding disability, expectations, identity, supports, desires, and sibling relationships, will be discussed in a semi-structured interview with each sibling. Data will be analysed following an interpretative phenomenological analysis (IPA). It is expected that findings will show the particularities of the experience of having a brother or a sister with ID/DD and the singular influence of the culture on siblings’ perceptions of quality of life. The results of this study will help to spread awareness around the necessity that researchers, practitioners, and policymakers take into account the cultural background of the individuals in order to provide them with better services and support. In this line, more culturally situated research is required to enlarge the knowledge in this field.

Keywords: culture, intellectual disability, quality of life, siblings

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Authors: Mavis Yaa Konadu Agyemang

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Despite provisions to uphold and safeguard the rights of persons with disability in Ghana, there is evidence that they still encounter several challenges which limit their full and effective involvement in mainstream society, including the gold mining sector. The study sought to explore how persons with physical disability (PWPDs) experience gold mining in the Obuasi Municipal Area. A qualitative research design was used to discover and understand the experiences of PWPDs regarding mining. The purposive sampling technique was used to select five key informants for the study with the age range of (24-52 years) while snowball sampling aided the selection of 16 persons with various forms of physical disability with the age range of (24-60 years). In-depth interviews were used to gather data. The interviews lasted from forty-five minutes to an hour. In relation to the setting, the interviews of thirteen (13) of the participants with disability were done in their houses, two (2) were done on the phone, and one (1) was done in the office. Whereas the interviews of the five (5) key informants were all done in their offices. Data were analyzed using Creswell’s (2009) concept of thematic analysis. The findings suggest that even though land degradation affected everyone in the area, persons with mobility and visual impairment experienced many difficulties trekking the undulating land for long distances in search of arable land. Also, although mining activities are mostly labour-intensive, PWPDs were not employed even in areas where they could work. Further, the cost of items, in general, was high, affecting PWPDs more due to their economic immobility and paying for other sources of water due to land degradation and water pollution. The study also discovered that the peculiar conditions of PWPDs were not factored into compensation payments, and neither were females with physical disability engaged in compensation negotiations. Also, although some of the infrastructure provided by the gold mining companies in the area was physically accessible to some extent, it was not accessible in terms of information delivery. There is a need to educate the public on the effects of mining on PWPDs, their needs as well as disability issues in general. The Minerals and Mining Act (703) should be amended to include provisions that would consider the peculiar needs of PWPDs in compensation payment.

Keywords: mining, resettlement, compensation, environmental, social, disability

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Authors: Sophia El Ouazzani, Amer M. Burhan, Mary Wickenden

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Background: Despite improvements in recent years, the Moroccan mental healthcare system still face disparity between available resources and the current population’sneeds. The societal stigma, and limited economic, political, and human resources are all factors in shaping the psychiatric system, exacerbating the discontinuity of services for users after discharged from the hospital. As a result, limited opportunities for social inclusion and meaningful community engagement undermines human rights and recovery potential for people with mental health problems, especially those with psychiatric disabilities from serious mental illness (SMI). Recovery-oriented practice, such as mental health rehabilitation, addresses the complex needs of patients with SMI and support their community inclusion. The cultural acceptability of recovery-oriented practice is an important notion to consider for a successful implementation. Exploring the extent to which recovery-oriented practices are used in Morocco is a necessary first step to assess the cultural relevance of such a practice model. Aims: This study aims to explore understanding and knowledge, perception, and perspective about core concepts in mental health rehabilitation, including psychiatric disability, recovery, and engagement in meaningful occupations for people with SMI in Morocco. Methods: A pilot qualitative study was undertaken. Data was collected via semi-structured interviews and focusgroup discussions with healthcare professional students. Questions were organised around the following themes: 1) students’ perceptions, understanding, and expectations around concepts such as SMI, mental health disability, and recovery, and 2) changes in their views and expectations after starting their professional training. Further analysis of students’ perspectives on the concept of ‘meaningful occupation’ and how is this viewed within the context of the research questions was done. The data was extracted using an inductive thematic analysis approach. This is a pilot stage of a doctoral project, further data will be collected and analysed until saturation is reached. Results: A total of eight students were included in this study which included occupational therapy and mental health nursing students receiving training in Morocco. The following themes emerged as influencing students’ perceptions and views around the main concepts: 1) Stigma and discrimination, 2) Fatalism and low expectations, 3) Gendered perceptions, 4) Religious causation, 5) Family involvement, 6) Professional background, 7) Inaccessibility of services and treatment. Discussion/Contribution: Preliminary analysis of the data suggests that students’ perceptions changed after gaining more clinical experiences and being exposed to people with psychiatric disabilities. Prior to their training, stigma shaped greatly how they viewed people with SMI. The fear, misunderstanding, and shame around SMI and their functional capacities may contribute to people with SMI being stigmatizedand marginalised from their family and their community. Religious causations associated to SMIsare understood as further deepening the social stigma around psychiatric disability. Perceptions are influenced by gender, with women being doubly discriminated against in relation to recovery opportunities. Therapeutic pessimism seems to persist amongst students and within the mental healthcare system in general and regarding the recovery potential and opportunities for people with SMI. The limited resources, fatalism, and stigma all contribute to the low expectations for recovery and community inclusion. Implications and future directions will be discussed.

Keywords: disability, mental health rehabilitation, recovery, serious mental illness, transcultural psychiatry

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Authors: Jamie Lee Harder

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In the context of rapidly changing social and economic circumstances in the developing world, this paper analyses access to public healthcare for poor people with disabilities in Cambodia. Like other countries of South East Asia, Cambodia is developing at rapid pace. The historical past of Cambodia, however, has set former social policy structures to zero. This past forces Cambodia and its citizens to implement new public health policies to align with the needs of social care, healthcare, and urban planning. In this context, the role of people with disabilities (PwDs) is crucial as new developments should and can take into consideration their specific needs from the beginning onwards. This paper is based on qualitative research with expert interviews and focus group discussions in Cambodia. During the field work it became clear that the identification tool for the poorest households (HHs) does not count disability as a financial risk to fall into poverty neither when becoming sick nor because of higher health expenditures and/or lower income because of the disability. The social risk group of poor PwDs faces several barriers in accessing public healthcare. The urbanization, the socio-economic health status, and opportunities for education; all influence social status and have an impact on the health situation of these individuals. Cambodia has various difficulties with providing access to people with disabilities, mostly due to barriers regarding finances, geography, quality of care, poor knowledge about their rights and negative social and cultural beliefs. Shortened budgets and the lack of prioritizations lead to the need for reorientation of local communities, international and national non-governmental organizations and social policy. The poorest HHs are identified with a questionnaire, the IDPoor program, for which the Ministry of Planning is responsible. The identified HHs receive an ‘Equity Card’ which provides access free of charge to public healthcare centers and hospitals among other benefits. The dataset usually does not include information about the disability status. Four focus group discussions (FGD) with 28 participants showed various barriers in accessing public healthcare. These barriers go far beyond a missing ramp to access the healthcare center. The contents of the FGDs were ratified and repeated during the expert interviews with the local Ministries, NGOs, international organizations and private persons working in the field. The participants of the FGDs faced and continue to face high discrimination, low capacity to work and earn an own income, dependency on others and less social competence in their lives. When discussing their health situation, we identified, a huge difference between those who are identified and hold an Equity Card and those who do not. Participants reported high costs without IDPoor identification, positive experiences when going to the health center in terms of attitude and treatment, low satisfaction with specific capacities for treatments, negative rumors, and discrimination with the consequence of fear to seek treatment in many cases. The problem of accessing public healthcare by risk groups can be adapted to situations in other countries.

Keywords: access, disability, health, inequality, Cambodia

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Authors: Asma Batool

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Immigrant families raising a child with developmental disabilities in Canada encounter many challenges during the process of disability care. Starting from the early screening of their child for diagnosis followed by challenges associated with treatment, access and service utilization. A substantial amount of research focuses on identifying barriers. However, the functional aspects of barriers in terms of their potential influences on parents and children with disabilities are unexplored yet. This paper presents functional analysis of barriers in disability care research by adopting a method of integrated approach. Juxtaposition of two developmental approaches, Bronfenbrenner’s ecological model and parents ‘transformational process model is generating multiple hypotheses to be considered while empirically investigating causal relationships and mediating or moderating factors among various variables related with disability care research. This functional analysis suggests that barriers have negative impacts on the physical and emotional development of children with disabilities as well as on the overall quality of family life (QOFL). While, barriers have facilitating impacts on parents, alternatively, the process of transformation in parents expedite after experiencing barriers. Consequently, parents reconstruct their philosophy of life and experience irreversible but continuous developmental change in terms of transformations simultaneously with their developing child and may buffer the expected negative impacts of barriers on disabled child and QOFL. Overall, this paper is suggesting implications for future research and parents’ transformations are suggesting potential pathways to minimize the negative influences of barriers that parents experience during disability care, hence improving satisfaction in QOFL in general.

Keywords: barriers in disability care, developmental disabilities, parents’ transformations, quality of family life

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Authors: Doctor Akanle Florence Foluso

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Access to health care and people’s ability to having a responsible, satisfying and safe sexual life is clearly a defined human right of people with hearing impairment and others with disabilities this paper looks at disability and sexuality: a human right approach to sexual and reproductive health of the hearing impaired adolescents in developing countries. This paper investigates the extent to which the hearing impaired has a satisfying, safe sexual life and whether their human right in regards to information education is violated. The study population consists of all hearing impaired adolescents and young adults aged 10-24 years who are currently enrolled in the primary and secondary schools in Nigeria. A sample of 389 hearing impaired adolescents was selected, an adapted version of the illustrative questionnaire for interview – survey by Johncleland was used to collect the data. A correlation of 0.80 was obtained at p<0.05 level of significance. Teachers in the schools of the deaf who used sign language were used in the administration of the questionnaire. The data generated were analyzed using Frequency Counts, Percentages, Means and Standard Deviation to give a Summary on responses on access to information, education, voluntary testing and counselling and other reproductive services. This is to investigate if the sexual and reproductive right violated or protected. Findings show that a gap exists in the level of knowledge of SRH services, voluntary counselling because more than half the respondents are not aware of these services in their community. Access to information, education and health services are rights denied the hearing impaired. So their SRH rights are violated.

Keywords: sexual right diability, family planning, pregnancy, diability

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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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Authors: Felyppe Blum Goncalves, Juliana Sebastiany

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In line with Brazilian legislation on the inclusion of persons with disabilities in the world of work, known as the 'quota law' (Law 8213/91) and in accordance with the prerogatives of the United Nations Convention on Human Rights of people with disabilities, which was ratified by Brazil through Federal Decree No. 6.949 of August 25, 2009, the SESI National Department, through Working Groups, structured the product Affordable Industry. This methodology aims to prepare the industries for the adequate process of inclusion of people with disabilities, as well as the development of an organizational culture that values and respects human diversity. All industries in Brazil with 100 or more employees must comply with current legislation, but due to the lack of information and guidance on the subject, they end up having difficulties in this process. The methodology brings solutions for companies through the professional qualification of the disabled person, preparation of managers, training of human resources teams and employees. It also advocates the survey of the architectural accessibility of the factory and the identification of the possibilities of inclusion of people with disabilities, through the compatibility between work and job requirements, preserving safety, health, and quality of life.

Keywords: inclusion, app, disability, management

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Authors: Barbara A. Perry

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In 1996, the New Zealand government and the Ministry of Education announced that they were setting up a "world class system of inclusive education". As a parent of a son with high and complex needs, a teacher, school Principal and Disability studies Lecturer, this author will track the changes in the journey towards inclusive education over the last 20 years. Strategies for partnering with families to ensure educational success along with insights from one of those on the crest of the wave will be presented. Using a narrative methodology the author will illuminate how far New Zealand has come towards this world class system of inclusion promised and share from personal experience some of the highlights and risks in the system. This author has challenged the old structures and been part of the setting up of new structures particularly for providing parent voice and insight; this paper provides a unique view from an insider’s voice as well as a professional in the system.

Keywords: disability studies, inclusive education, special education, working with families with children with disability

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Authors: Valentina Manna, Oscar Pisanti

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The term sibling has been adopted by Italian brothers and sisters of people with disabilities, to define themselves as a group with shared features. This choice is due to the importance of underlying the centrality of what being a brother/sister means to these people because of and beyond the disability. Being a sibling offers great opportunities to develop empathy and relational skills but it may also amplify the typical dynamics of fraternal relationships dealing with envy, rivalry and concern. This outlines a condition of potential developmental risk for the non-disabled sibling, being at the same time a great resource for the child with special needs, as actor of an intimate relationship usually lasting after that one with parents. However, young siblings are often unheeded in their needs for comprehension of disability and not considered as persons requiring attention themselves. Moreover, scholars have scarcely undertaken an exploration of siblings’ perspective as competent contributors for producing knowledge useful to the benefit of families with special needs children. This contribution describes a preventive intervention for young siblings (6 – 16 years) of children with Down syndrome, by means of a psychodynamic-oriented group where participants could communicate, explore and share their emotional experiences as siblings. Based on a participatory approach, the program represents an action-research project, involving siblings as key experts for our understanding of siblings’ lives. The initiative used social media and video technologies to rise children’s voice: as a final product, participants were involved in the realization of a video campaign –which they defined ‘a difficult advertising’– built on the insights generated by the program and addressed to other siblings to help them facing and recognizing resources and difficulties related to their status. The final video campaign realized by the participants summarizes the main themes emerged during the intervention; as revealed by a thematic analysis, they are related to the difficulty in feeling to have a personal identity, to face disability as a form of ‘untought known’ and to integrate ambivalent emotions. In conclusion, the group device revealed its efficacy as a preventive tool: it allowed participants to deeply reflect on their own experiences and to communicate them for the first time in a verbal and mentalized form.

Keywords: down syndrome, group, siblings, prevention

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Authors: Aisling De Paor

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Scientific and technological developments are driving genetics and genetic technologies into the public sphere. Scientists are making genetic discoveries as to the make up of the human body and the cause and effect of disease, diversity and disability amongst individuals. Technological innovation in the field of genetics is also advancing, with the development of genetic testing, and other emerging genetic technologies, including gene editing (which offers the potential for genetic modification). In addition to the benefits for medicine, health care and humanity, these genetic advances raise a range of ethical, legal and societal concerns. From an ethical perspective, such advances may, for example, change the concept of humans and what it means to be human. Science may take over in conceptualising human beings, which may push the boundaries of existing human rights. New genetic technologies, particularly gene editing techniques create the potential to stigmatise disability, by highlighting disability or genetic difference as something that should be eliminated or anticipated. From a disability perspective, use (and misuse) of genetic technologies raise concerns about discrimination and violations to the dignity and integrity of the individual. With an acknowledgement of the likely future orientation of genetic science, and in consideration of the intersection of genetics and disability, this paper highlights the main concerns raised as genetic science and technology advances (particularly with gene editing developments), and the consequences for disability and human rights. Through the use of traditional doctrinal legal methodologies, it investigates the use (and potential misuse) of gene editing as creating the potential for a unique form of discrimination and stigmatization to develop, as well as a potential gateway to a form of new, subtle eugenics. This article highlights the need to maintain caution as to the use, application and the consequences of genetic technologies. With a focus on the law and policy position in Europe, it examines the need to control and regulate these new technologies, particularly gene editing. In addition to considering the need for regulation, this paper highlights non-normative approaches to address this area, including awareness raising and education, public discussion and engagement with key stakeholders in the field and the development of a multifaceted genetics advisory network.

Keywords: disability, gene-editing, genetics, law, regulation

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Authors: Ajved Ahmed

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This research paper explores the intricate relationship between sports activities and disability, aiming to shed light on the multifaceted impacts of sports participation on individuals with disabilities. As the world grapples with the challenges posed by the growing population of people with disabilities, understanding the role of sports in their lives becomes increasingly important. The paper begins by providing a comprehensive overview of the diverse forms of disabilities, emphasizing the wide spectrum of physical, sensory, and cognitive impairments. It then delves into the benefits of sports activities for individuals with disabilities, highlighting the profound physical, psychological, and social advantages that engagement in sports can offer. These benefits encompass improved physical fitness, enhanced self-esteem and mental well-being, increased social integration, and a sense of empowerment and independence. Furthermore, the paper examines the barriers and challenges that individuals with disabilities often encounter when attempting to participate in sports activities, ranging from inaccessible facilities to societal prejudices and stereotypes. It underscores the critical role of inclusive sports programs, adaptive equipment, and policy initiatives in overcoming these barriers and fostering an environment where everyone can enjoy the benefits of sports. Through a comprehensive review of existing research and case studies, the paper also explores specific sports and their suitability for various types of disabilities. It discusses adapted sports like wheelchair basketball, blind soccer, and para-swimming, showcasing how these tailored activities not only accommodate disabilities but also promote excellence and competition at the highest levels. Additionally, the research paper delves into the economic and societal implications of increased sports participation among individuals with disabilities. It explores the potential for greater inclusion in the workforce, reduced healthcare costs, and the fostering of a more inclusive and accepting society. This research paper underscores the profound impact of sports activities on individuals with disabilities, highlighting their potential to improve physical health, mental well-being, and social integration. It calls for continued efforts to break down barriers and promote inclusive sports programs to ensure that everyone, regardless of their abilities, can access the transformative power of sports. Ultimately, this study contributes to a broader understanding of disability and sports, emphasizing the importance of inclusivity and accessibility in creating a more equitable and healthier society.

Keywords: sports and health, sports and disability, curing disability through sports, health benefits of sports

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Authors: Melissa Angus Baboun

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Utilizing a Critical Discourse Analysis (CDA) methodology and a theoretical framework based on disability studies, how Jamaican and Trinidadian newspapers discussed issues relating to the Deaf community were examined. The term deaf was inputted into the search engine tool of the online website for the Jamaica Observer and the Trinidad & Tobago Guardian. All 27 articles that contained the term deaf in its content and were written between August 1, 2017 and November 15, 2017 were chosen for the study. The data analysis was divided into three steps: (1) listing and analysis instances of metaphorical deafness (e.g. fall on deaf ears), (2) categorization of the content of the articles into the models of disability discourse (the medical, socio-cultural, and superscrip models of disability narratives), and (3) the analysis of any additional data found. A total of 42% of the articles pulled for this study did not deal with the Deaf community in any capacity, but rather instances of the use of idiomatic expressions that use deafness as a metaphor for a non-physical, undesirable trait. The most common idiomatic expression found was fall on deaf ears. Regarding the models of disability discourse, eight articles were found to follow the socio-cultural model, two were found to follow the medical model, and two were found to follow the superscrip model. The additional data found in these articles include two instances of the term deaf and mute, an overwhelming use of lower case d for the term deaf, and the misuse of the term translator (to mean interpreter).

Keywords: deafness, disability, news coverage, Caribbean newspapers

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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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