Children and individuals with developmental disabilities compared to typical participants are disadvantaged not only by virtue of being vulnerable to risks inherent in research participation but also by the higher likelihood of exclusion from research altogether. Current regulatory and ethical guidelines although necessary for their protection do not sufficiently ensure fair distributive justice. Yet, in view of disproportionately higher burdens of co-occurring physical and mental disorders in individuals with DD, they are better positioned to benefit from research by equitable (...) participation. Greater elucidation of this ethical dilemma is called for by researchers, institutional review boards, and funding agencies to urgently redress the imbalance. This article discusses many of the regulatory principles to ensure better research participation of children and individuals with DD: human rights, validity, distributive justice, beneficence/nonmaleficence, and autonomy. (shrink)

This research aims to examine access to medical treatment during the COVID-19 pandemic for people living with disabilities. During the COVID-19 pandemic, the practical and ethical problems of allocating limited medical resources such as intensive care unit beds and ventilators became critical. Although different countries have proposed different guidelines to manage this emergency, these proposed criteria do not sufficiently consider people living with disabilities. People living with disabilities are therefore at a higher risk of exclusion from medical (...) treatments as physicians tend to assume they have poor quality of life, whereas access to medical treatment should be based on several parameters, including clinical data and prognosis. However, the COVID-19 pandemic shifts the medical paradigm from person-centred medicine to community-centred medicine, challenging the main ethical theories. We reviewed the main guidelines and recommendations for resources allocation and examined their position toward persons with disabilities. Based on our findings, we propose criteria for not discriminating against people with disabilities in allocating resources. The shift from person-centred to community-centred medicine offers opportunities but also risks sacrificing the most vulnerable people. The principle of reasonable accommodation must always be considered to guarantee the rights of persons with disabilities. (shrink)

The design, implementation, and outcome of game-based learning for learners with disabilities have not been sufficiently examined systematically. Particularly, learner-based and contextual factors, as well as the essential roles played by various stakeholders, have not been addressed when game-based learning applications are used in special education. Therefore, a systematic literature review using the Activity Theory was conducted to analyse studies about game-based learning for learners with disabilities. Content analysis of 96 studies reported relevant information with respect to each (...) activity component— subject, technology, object, rules, community, division of labour and outcome. Furthermore, this study identified existing gaps from the reviewed studies, including occasional lack of parental engagement, difficulty of standardising performance measures due to the heterogeneity of learner profiles and contradictions. Finally, recommendations were made under each activity component. The study concluded that both general and domain-specific guidelines should be created for each disability category proposed in this review to assist practitioners who wish to use game-based learning with learners with disabilities. (shrink)

Cognitive enhancement is an increasingly discussed topic and policy suggestions have been put forward. We present here empirical data of views of parents of children with and without cognitive disabilities. Analysis of the interviews revealed six primary overarching themes: meanings of health and treatment; the role of medicine; harm; the ‘good’ parent; normality and self-perception; and ability. Interestingly none of the parents used the term ethics and only one parent used the term moral twice.

Learning disabilities are highly prevalent on college campuses, yet students with learning disabilities graduate at lower rates than those without disabilities. Academic and psychosocial supports are essential for overcoming challenges and for improving postsecondary educational opportunities for students with learning disabilities. A holistic, multi-level model of campus-based supports was established to facilitate culture and practice changes at the institutional level, while concurrently bolstering mentors’ abilities to provide learning disability-knowledgeable support, and simultaneously creating opportunities for students’ personal (...) and interpersonal development. Mixed methods were used to investigate implementation of coordinated personal, interpersonal, and institutional level supports for undergraduate science, technology, engineering, and math (STEM) students with learning disabilities. A one-group pre-test post-test strategy was used to examine undergraduate outcomes. Participants included 52 STEM undergraduates with learning disabilities, 57 STEM graduate student mentors, 34 STEM faculty mentors, and 34 university administrators and personnel as members of a university-wide council. Enrolled for two years, undergraduates were engaged in group meetings involving psychoeducation and reflective discussions, development of self-advocacy projects, and individual mentorship. Undergraduates reported improved self efficacy (p =.001), campus connection (p <.001), professional development (p ≤.002), and self advocacy (p <.001) after two academic years. Graduate student mentors increased their understanding about learning disabilities and used their understanding to support both their mentees and other students they worked with. Council members identified and created opportunities for delivering learning disability-related trainings to faculty, mentors and advisors on campus, and for enhancing coordination of student services related to learning and related disorders. Disability-focused activities became integrated in broader campus activities regarding diversity. This research explicates a role that college campuses can play in fostering the wellbeing and the academic and career development of its students with developmental learning and related disorders. It offers an empirically tested campus-based model that is multilevel, holistic, and strengths-based for supporting positive outcomes of young people with learning disabilities in STEM. Moreover, findings advance the knowledge of supports and skills that are important for self-regulating and navigating complex and multi-faceted disability-related challenges within both the post-secondary educational environment and the young adults’ sociocultural context. (shrink)

Increasingly, commissioners and providers of services for people with intellectual disabilities are turning to assistive technology and telecare as a potential solution to the problem of the increased demand for services, brought about by an expanding population of people with intellectual disabilities in the context of relatively static or diminishing resources. While there are numerous potential benefits of assistive technology and telecare, both for service providers and service users, there are also a number of ethical issues. The aim (...) of this paper is to raise these issues and to set them within the ethical framework proposed by Beauchamp and Childress. There is a need for a wider debate as a first step in the development of strategies to address the issues raised in the paper. (shrink)

Marilyn Adams rightly pointed out that there are many kinds of evil, some of which are horrendous. I claim that one species of horrendous evil is what I call horrendous-difference disabilities. I distinguish two subspecies of horrendous-difference disabilities based in part on the temporal relation between one’s rational moral wishing for a certain human function F and its being thwarted by intrinsic and extrinsic conditions. Next, I offer a theodicy for each subspecies of horrendous-difference disability. Although I appeal (...) to some claims made by Marilyn Adams for this theodicy, I reject one particular claim. I deny that one must be aware that one participates in a horrendous evil when the horrific event occurs. To develop this point and its relevance for a theodicy for horrendous-difference disabilities, I engage with Andrew Chignell’s work on infant suffering. In doing so, I show that what partly motivates the claim is a time-bias, i.e., near-bias. By rejecting this time-bias, I show how it is possible, given post-mortem life, for persons with profound cognitive disabilities to participate in horrendous evils and how these might be defeated by God. (shrink)

The development of the CRISPR gene editing technique has been hyped as a technique that could fundamentally change scientific research and its clinical application. Unrecognized is the fact that it joins other technologies that have tried and failed under the same discourse of scientific hype. These technologies, like gene therapy and stem cell research, have moved quickly passed basic research into clinical application with dire consequences. Before hastily moving to clinical applications, it is necessary to consider basic research and determine (...) how CRISPR/Cas systems should be applied. In the case of single gene diseases, that application is expected to have positive impacts, but as we shift to more complex diseases, the impact could be unintentionally negative. In the context of common disabilities, the level of genetic complexity may render this technology useless but potentially toxic, aggravating a social discourse that devalues those with disabilities. This paper intends to define the issues related to disability that are associated with using the CRIPSR/Cas system in basic research. It also aims to provide a decision tree to help determine whether the technology should be utilized or if alternative approaches beyond scientific research could lead to a better use of limited funding resources. (shrink)

This paper spotlights ways in which sexual capacities relate to central human capabilities, such as the ability to generate a personally meaningful story of one’s life; be physically, mentally and emotionally healthy; experience bodily integrity; affiliate and bond with others; feel and express a range of human emotions; and choose a plan of life. It sets forth a dignity-based argument for affording older people access to sex robots as part of reasonable efforts to support their central human capabilities at a (...) floor level. The argument develops stepwise: (1) first, I dispel ageism and negative stereotypes about later-life sexuality, showing their deep historical roots in medicine and science; (2) second, I set forth a positive argument, grounded in capability accounts of justice, for deploying sex robots for older people with disabilities; (3) finally, after responding to objections, I conclude that sex robots are a reasonable way to support later-life sexuality for persons with disabilities. While often depicted as a product for younger, able-bodied people, this paper is a bid for reimagining sex robots as a product for older, disabled people. (shrink)

L’emploi est au cœur du bien-être d’un individu. Les attentes liées au travail des personnes ayant une déficience intellectuelle ont été comparées à celles des coordonnateurs de services. Les variables comprenaient le type de travail attendu, le nombre d’heures de travail prévu, les préoccupations liées à l’emploi, les mesures de soutien souhaitées sur le lieu de travail et l’influence de la gravité de la déficience intellectuelle et de l’expérience de travail du coordonnateur de services sur les attentes en matière de (...) travail. Les données ont été recueillies auprès de 46 personnes ayant une déficience intellectuelle par le biais d’entretiens et de 46 coordonnateurs au moyen d’un sondage en ligne. Les résultats indiquaient des attentes professionnelles positives globales. Le travail le plus courant attendu était le service et le commerce. L’emploi concurrentiel était attendu plus fréquemment que les ateliers protégés. Alors que les attentes des coordonnateurs de services et des personnes ayant une déficience intellectuelle légère étaient étroitement alignées, il existait une distinction plus grande entre les attentes des coordonnateurs et celles ayant une déficience intellectuelle modérée ou grave. Ces résultats ont des implications importantes pour faciliter le placement des adultes ayant une déficience intellectuelle. (shrink)

This comment argues for increased tolerance of privacy risks in the Internet activity of adults with intellectual disabilities. Excessive caution about such risks denies those individuals not only the great benefits of Internet use but also the difficult but valuable experiences of loss, disappointment, and hurt associated with those risks. A level of risk-aversion appropriate for small children will be disrespectful for adults with intellectual disabilities. To the extent that additional safeguards are justified, they are better achieved through (...) individualized security and privacy settings than through caregiver oversight. (shrink)

This study was conducted to investigate the relationship between posttraumatic growth, resilience, positive coping style, and self-efficacy among the primary caregivers of children with developmental disorders in Chongqing, China. A total of 198 primary caregivers aged from 22 to 66 years old, including 155 females and 43 males, were enrolled. The Posttraumatic Growth Inventory, Connor-Davidson Resilience Scale-10, Simplified Coping Style Questionnaire, and General Self-Efficacy Scale were used for data collection. The results found that PTG could be positively predicted by resilience. (...) Positive coping style and self-efficacy mediated the relationship between resilience and PTG. The different levels of PTG were determined by the resident location, monthly income and education of the primary caregivers. The results suggest that it is critical to improve the mental health of the primary caregivers of children with developmental disabilities. Our results also provide a scientific basis for future research. (shrink)

There is a lack of writing on the issue of the education rights of people with disabilities by authors of any theoretical persuasion. While the deficiency of theory may be explained by a variety of historical, philosophical and practical considerations, it is a deficiency which must be addressed. Otherwise, any statement of rights rings out as hollow rhetoric unsupported by sound reason and moral rectitude. This paper attempts to address this deficiency in education rights theory by postulating a communitarian (...) theory of the education rights of people with disabilities. The theory is developed from communitarian writings on the role of education in democratic society. The communitarian school, like the community within which it nests, is inclusive. Schools both reflect and model the shape of communitarian society and have primary responsibility for teaching the knowledge and virtues which will allow citizens to belong to and function within society. Communitarians emphasise responsibilities, however, as the corollary of rights and may require the individual good to yield to the community good when the hard cases arise. The article not only explains the basis of the right to an inclusive education, therefore, but also engages with the difficult issue of when such a right may not be enforceable. (shrink)

The objective of this article is to explore the identity construction by students with invisible disabilities as disclosed in medical consultations at a university health center. In particular, I work on the assumption that analysing the discursive processes through which students with invisible disabilities construct, negotiate and resist their roles and identities may contribute to a better understanding of living and studying with an invisible condition. Taking a discourse analytic approach, I consider identity as a dynamic and negotiable (...) process that takes place in specific interactional occasions. The findings have shown that these students sometimes construct contested identities as patients, students, or experts during medical consultations, responding to conflicting expectations of others and their own. (shrink)

This paper uses themes from Catholic social teaching to challenge Church and society to prioritize a group that is left behind by social injustice: people with intellectual disabilities. It provides background information on intellectual disability, summarizes moral principles of Catholic social doctrine, describes sociological facts about how people with intellectual disabilities are left behind by social factors, and prescribes actionable solutions for treating them as equal members of society. The goal is to identify how to shape a society (...) at all socio-ecological levels in ways that better protect the dignity, solidarity, and participation of people with intellectual disabilities. Although the analysis references the US and is limited to intellectual disabilities, its lessons apply to other countries and disabilities as well. (shrink)

People with cognitive disabilities and their advocates often express uneasiness about prenatal testing and the selective termination of pregnancies because the fetus has a cognitively disabling condition. There are high rates of abortion in such circumstances, and new forms of noninvasive prenatal testing (NIPT) have been introduced to improve the detection of genetic conditions. This chapter argues that the feeling of disquiet about prenatal testing and selective termination is justified. Philosophers working in the field of bioethics often offer reassurance (...) that such feelings are unjustified. This chapter shows that such reassurances fail and presents an argument that bias against people with cognitive disability plays a role in prenatal decision-making. Feelings of disquiet are justified because it is justified to object to bias that is otherwise directed at oneself. (shrink)

The purpose of the present study was to predict and explain the academic cheating behaviors of elementary school students with learning disabilities by applying the cusp catastrophe model. Participants were 32 students with identified LD from state governmental agencies although all both them and the typical students participated in the experimental manipulation. Academic cheating was assessed using an empirical paradigm where true achievement was subtracted from achievement in a test without proper invigilation. Data analysis supported the proposed cusp catastrophe (...) models, where mastery-related motives acted as asymmetry and performance goals as bifurcation variables respectively. These findings were confirmed with application of the interactive goal hypothesis, where the interactive approach and avoidance performance goal term functioned as a splitting factor in the relationship between adaptive motivation and performance. (shrink)

1.Introduction Despite more than two decades of strategies and policies to promote equal employment opportunities and avoid discrimination against persons with disabilities, major employment and participation gaps still remain. Persons with disabilities have significantly lower employment rates, and higher inactivity and unemployment rates than persons without disabilities. If they do work, they are less likely to be in full-time employment and more likely to be in subsidised or supported emp...

BackgroundAs moral case deliberations (MCDs) have increasingly been implemented in health care institutions as a form of ethics support, it is relevant to know whether and how MCDs actually contribute to positive changes in care. Insight is needed on what actually happens in daily care practice following MCD sessions. This study aimed at investigating the impact of MCD and exploring how ‘impact of MCD’ should be conceptualized for future research.MethodsA multiple-case study was conducted in a care organization for people with (...) intellectual disabilities and/or acquired brain injury, by observing MCD sessions as ‘cases’, followed by interviews with health care professionals concerning the follow-up to these cases, and a focus group with involved MCD facilitators. A conceptual scheme concerning the possible impact formed the basis for analysis: (1) individual moral awareness; (2) the actions of health care professionals; (3) collaboration among health care professionals; (4) the concrete situation of the client; (5) the client’s quality of care and life; (6) the organizational and policy level.ResultsAccording to interviewees, their moral awareness and their collaboration, both among colleagues and with clients’ relatives, improved after MCD. Perceived impact on client situation, quality of care/life and the organizational level varied among interviewees or was difficult to define or link to MCD. Three aspects were added to the conceptual scheme concerning the impact of MCD: (a) preparations and expectations prior to the MCD session; (b) a translational step between the conclusions of the MCD session and practical events in the following period, and (c) collaboration with clients’ relatives. A negative impact of MCD was also found on misunderstandings among participants and disappointment about lack of follow-up.ConclusionsConcretizing and conceptualizing the ‘impact’ of MCD is complicated as many factors play a role either before or during the transition from MCD to practice. It is important to consider ‘impact’ in a broad sense and to relate it to the goals and context of the MCD in question. Future studies in this field should pay additional attention to the preparations, content and process involved in ethics support, including clients’ and relatives’ experiences. (shrink)

Augmentative and alternative communication brain-computer interface systems are intended to offer communication access to people with severe speech and physical impairment without requiring volitional movement. As the field moves toward clinical implementation of AAC-BCI systems, research involving participants with SSPI is essential. Research has demonstrated variability in AAC-BCI system performance across users, and mixed results for comparisons of performance for users with and without disabilities. The aims of this systematic review were to describe study, system, and participant characteristics reported (...) in BCI research, summarize the communication task performance of participants with disabilities using AAC-BCI systems, and explore any differences in performance for participants with and without disabilities. Electronic databases were searched in May, 2018, and March, 2021, identifying 6065 records, of which 73 met inclusion criteria. Non-experimental study designs were common and sample sizes were typically small, with approximately half of studies involving five or fewer participants with disabilities. There was considerable variability in participant characteristics, and in how those characteristics were reported. Over 60% of studies reported an average selection accuracy ≤70% for participants with disabilities in at least one tested condition. However, some studies excluded participants who did not reach a specific system performance criterion, and others did not state whether any participants were excluded based on performance. Twenty-nine studies included participants both with and without disabilities, but few reported statistical analyses comparing performance between the two groups. Results suggest that AAC-BCI systems show promise for supporting communication for people with SSPI, but they remain ineffective for some individuals. The lack of standards in reporting outcome measures makes it difficult to synthesize data across studies. Further research is needed to demonstrate efficacy of AAC-BCI systems for people who experience SSPI of varying etiologies and severity levels, and these individuals should be included in system design and testing. Consensus in terminology and consistent participant, protocol, and performance description will facilitate the exploration of user and system characteristics that positively or negatively affect AAC-BCI use, and support innovations that will make this technology more useful to a broader group of people.Clinical trial registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018095345, PROSPERO: CRD42018095345. (shrink)

Advances in technology, research development, and teaching practices have brought improvements in the training, levels of autonomy, and quality of life of people who need support and resources appropriate to their circumstances of disability. This article focuses on empirically analyzing the usefulness of treatments that have been supported by technology to answer the question “How do technological ecosystems being used help people with special educational needs?” The multiple case study methodology was used to address six categories of analysis: project data, (...) objectives, processes, outputs and outcomes, technologies, and impact. The processes, open in communication, were characterized as transversal, ethical, and sustainable. The results yielded various technological ecosystems that support people with disabilities, deliver the help they need to improve their health, and provide enjoyable user experiences. At the same time, they promote the training and improvement of teaching methodologies and involve families in order to improve their knowledge, attitudes, and care of children, young people, and adults with functional diversity. (shrink)

This study aimed to use TED Talks, which are abundant with real-life examples of English language use, that might improve the public speaking skills of elementary-level Jordanian EFL students with learning disabilities. The study also aimed at identifying the attitudes of the students with learning disabilities toward using TED Talks to increase motivation to learn English. This research used a quasi-experimental approach. The present study included 68 female EFL tenth graders from the Irbid Schools for Girls, a public (...) institution under the Irbid Directorate of Education. The researcher created an educational program based on the TED talks. The pre-post-test was used to measure the students’ progress and a questionnaire was used to measure their attitudes to this strategy. The program seems to have created good levels of interaction among the students and boosted their appetite to participate and engage with the visual and audio materials presented in the TED Talks videos. The students showed positive attitudes toward using the TED Talks program to raise their motivation to learn English language. (shrink)

This paper examines the movement for independent living among the Japanese with disabilities from the perspective of multiculturalism and human rights. The IL movement questions the conventional idea, widely held by Japanese without disabilities, that disabled people are in need of special care and cannot live independently in ordinary communities. The IL movement advocates: 1) the reinterpretation of “disability” as mere “difference”, 2) the equal right to autonomy and social participation for the disabled, and 3) the unique right (...) to care and support that enable the disabled to be autonomous. The IL movement thus projects a new “disability culture” that assigns different meanings to disability and calls for radical change in social relationships. The IL movement then is one of many forces that celebrates diversity and advocates pluralism in Japanese society in defiance of the myth of a “homogeneous monocultural” Japan. The IL movement highlights the right to care as a basic human right which is a precondition for the right to autonomy. Consequently, the IL movement reinterprets the notion of autonomy and enriches the concept of “human rights.”. (shrink)

Research indicates that academic growth and student behavior are inextricably linked. Schools that systematically address both academic and social/emotional learning (SEL) have shown increased student achievement when compared to schools that do not address both factors ( Elliott, Huai & Roach, 2007 ; Hawken, Vincent & Schumann, 2008 ). Even with this understanding, outcomes for students with emotional and behavioral disabilities (EBD) continue to be of concern ( Bradley, Doolittle & Bartolotta, 2008 ). This study explores the effectiveness of (...) integrating SEL and social studies learning in the self-contained special education classroom for students with EBD using Storypath, an inquiry-based social studies curriculum. We hypothesized that the systematic integration of SEL opportunities into meaningful, well-planned and engaging academic instruction could provide students with an opportunity to authentically learn and practice key social and academic skills. Quantitative findings via an online survey and qualitative findings via interviews and observations indicate that students with EBD can successfully engage in less structured and more cognitively challenging academic activities and use SEL skills effectively in the context of these lessons. (shrink)

A. Klimczuk, Book review: A. Rimmerman, "Social Inclusion of People with Disabilities: National and International Perspectives", New York: Cambridge University Press, 2013, "Human Rights Review" Vol. 16, Iss. 4 2015, pp. 397-399.

Persons with profound intellectual and multiple disabilities cannot speak about their Quality of Life, which makes it necessary to involve others. In current approaches, these ‘others’ are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers’ knowledge on the QoL of a person with PIMD a theoretical basis that (...) values these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers’ experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made. (shrink)

The dominant idea in debates on social inclusion of people with intellectual disabilities is that social inclusion requires recognition of their ‘sameness’. As a result, most care providers try to enable people with intellectual disabilities to live and participate in ‘normal’ society, ‘in the community’. In this paper, we draw on (Pols, Medicine Health Care and Philosophy 18:81–90, 2015) empirical ethics of care approach to give an in-depth picture of places that have a radically different take on what (...) social inclusion for people with intellectual disabilities looks like: places known as ‘sheltered living institutions’. We argue these places can be seen as ‘communities of difference’ catered to the specific needs and capacities of the residents. We then contend that these communities raise questions about what a good life for people with intellectual disabilities looks like and where and how it ought to be realised; questions not posed very often, as they get muzzled by the dominant rhetoric of normalisation and the emphasis on sameness. (shrink)

It is widely accepted among medical ethicists that competence is a necessary condition for informed consent. In this view, if a patient is incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient. We call this the competence model. According to a recent report of the United Nations (UN) High Commissioner for Human Rights, article 12 of the UN Convention on the Rights of (...) Persons with Disabilities (CRPD) presents a wholesale rejection of the competence model. The High Commissioner here adopts the interpretation of article 12 proposed by the Committee on the Rights of Persons with Disabilities. On this interpretation, CRPD article 12 renders it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired decision-making capacity and demands the replacement of all regimes of substitute decision-making by supported decision-making. In this paper, we explicate six adverse consequences of CRPD article 12 for persons with mental disabilities and propose an alternative way forward. The proposed model combines the strengths of the competence model and supported decision-making. (shrink)

Background: Humor, both producing and appreciating, underpins positive social interactions acting as a facilitator of communication. There are clear links to wellbeing that go along with this form of social engagement. However, humor appears to be a seldom studied, cross-disciplinary area of investigation when applied to people with an intellectual disability, this review collates the current state of knowledge regarding the role of humor behavior in the social interactions of people with intellectual disabilities and their carers. Method: A systematic (...) review utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines was completed which aimed to explore the current state of knowledge and quality of empirical evidence relating to humor in people with intellectual disabilities. Following this, articles were grouped thematically and summarized. A comprehensive search of four electronic databases (1954–2017) and additional search strategies yielded 32 articles which met the final inclusion criteria. Results: Humor played a significant positive and negative role in the social interactions of people with intellectual disabilities. Research had investigated humor in the classroom and humor expression in different groups including those with autism, Down syndrome, Angelman syndrome, Williams syndrome and Rett syndrome. Few investigations directly studied humor appreciation and comprehension hence themes did not focus solely on humor production/appreciation. Humor comprehension was reportedly supported by gestures. Some groups with intellectual disabilities found non-literal humor (e.g. sarcasm, irony) more difficult to understand which may affect social relationships. Various types of humor were found to be appreciated. The role of humor in relationship development, social facilitation, creativity and stigma had all received some limited attention. Humor also played a role for carer groups in coping with and enjoying the caring role. Research varied in quality with few experimental studies and mainly quasi-experimental and well-conducted qualitative studies. Conclusions: This review revealed the importance of humor behavior in many aspects of the social lives of people with intellectual disabilities. Limited disparate research exists pertaining to humor in this group, suggesting the need for further robust research in this area, including more high quality primary research in the areas of humor production, appreciation, comprehension and stigma. (shrink)

Exploring the dynamics of power: A Foucauldian analysis of care planning in learning disabilities services This paper draws upon a study completed in 2000 that focused upon health and welfare provision for people with learning disabilities in one English county. This study drew upon the theoretical insights of Michel Foucault to provide an analysis of the micro politics of care planning. This involved the analysis of text from two sources: the academic literature and interview material gained from a (...) number of professionals working in health and welfare services for people with learning disabilities. Drawing upon this research material, the first part of this paper briefly explores the relationship between policy, professional practice and the people who are the subjects of that practice. The discussion then moves on to consider Foucault's five methodological precautions and the way power produces a localised web of activity that identifies specific targets for management. In this process power draws into the web a range of informal and formal practices that initially lie outside of the web. The discourse produced through the activity surrounding care planning provides the evidence of this flow of power. This discourse then takes on the status of science (truth), which reproduces this activity. (shrink)

The importance of professional competence lies in the effective application of job-oriented knowledge and skills which guarantee one’s successful adaptation to the work. This study analyzes the perception of the importance of physical activity and sports professionals’ competence in working with individuals with disabilities in Spain. As a descriptive quantitative study, face-to-face interviews were conducted through a survey to extract the data. The sample consisted of 214 PAS professionals working with people with disabilities. According to the results, the (...) analyzed constituents of professional competence are important for adequate performance, with the exception of competences of leadership and use of new technologies. It was also found that the perceived importance of each element of professional competence varies according to age, experience and training. Based on the obtained results, the degree of importance of each constituent of professional competence and its implication for the access of people with disabilities to high-quality physical activity and sports services was determined. (shrink)

La Convention des Nations Unies relative aux droits des personnes handicapées (CDPH) est associée à un changement de paradigme dans la manière d’aborder le handicap en considérant les personnes handicapées comme des titulaires de droits et des membres actifs de la société. Elle vise à garantir l’inclusion des personnes handicapées dans la vie de la communauté et traite de la participation culturelle des personnes handicapées dans son article 30. Ce texte de recherche porte sur la mise en œuvre de l’article (...) 30 et s’attache à chercher des preuves de ce changement de paradigme dans la façon dont les États parties envisagent la participation culturelle. Focalisé sur l’Europe et basé sur une analyse documentaire qualitative systématique des rapports des États au Comité des droits des personnes handicapées et des recommandations formulées par ce dernier, cet article montre que le modèle médical du handicap demeure le fondement de la participation culturelle. Néanmoins, les signes d’un changement de paradigme se manifestent dans la manière dont les États abordent l’accessibilité et l’identité de certains groupes. L’accès physique des bâtiments et du patrimoine est un enjeu important et une prise de conscience sur la nécessité de faciliter l’accès au contenu culturel apparaît. Cet article conclut que le changement de paradigme dans le domaine culturel, tout en étant essentiel pour parvenir à l’inclusion des personnes handicapées, reste encore à réaliser. (shrink)

Entrepreneurship has undoubted social value as it contributes to socio-economic development of the context where entrepreneurship takes place. When the entrepreneurial activity is undertaken among especially vulnerable groups in the labor market, the multiplying effect of this value is made explicit in society, in general, and in the collective of people with disabilities, in particular. The objective of this research study is to explore under which conditions this happens through the analysis not only of the relationship between the competencies (...) that PWDs attribute to themselves and their development of the entrepreneurial activity but also of that between entrepreneurship and certain conditions that potentially create value by increasing the autonomy among this collective. A quantitative methodology based on the analysis of the survey carried out on a sample of 224 entrepreneurs with physical, sensory, or organic disabilities throughout Spain has been used. According to the results, entrepreneurs with disabilities have a higher self-evaluation competency. Furthermore, significant results concerning the link between the form of autonomous cohabitation of this collective and entrepreneurship have been obtained. (shrink)

This comment on Chalgoumi et al.’s article “Information Privacy for Technology Users with Intellectual and Developmental Disabilities: Why Does It Matter?” focuses on the concept of autonomy in order to expand the scope of the ethical discussion. First we explore the conceptual and practical relations between privacy and autonomy. Following this, we address the issue of underfunding of information technology for persons with intellectual and developmental disabilities in terms of distributive justice and provide some potential policy solutions.

On July 2021, the UK High Court of Justice heard the Case CO/2066/2020 on the application of Heidi Crowter who lives with Down’s syndrome, and Máire Lea-Wilson whose son Aidan has Down’s syndrome. Crowter and Lea-Wilson, with the support of the disability rights campaign, ‘Don’t Screen Us Out’, have been taking legal action against the Secretary of State for Health and Social Care (the UK Government) for a review of the 1967 Abortion Act: the removal of section 1(1)(d) making termination (...) of pregnancy lawful for ‘severe’ fetal indications detected after 24 weeks' gestation. On 23 September 2021, the High Court dismissed the claim. This action came at a time when non-invasive prenatal testing (NIPT) was introduced into the NHS England Fetal Anomaly Screening Programme for the trisomies 21, 13 and 18. The implementation of NIPT has been heavily criticised, in particular by ‘Don’t Screen Us Out’ campaigners, for increasing fetal selection and discrimination of people living with disabilities. The case of Crowter and Lea-Wilson echoes debates in other European countries such as in France and Germany, where the introduction of NIPT in the public healthcare system has provoked equally vehement public reactions and discussions. The comparison between these three countries allows contextualising the public discourses around NIPT and the ground for termination of pregnancy in relation to different socio-cultural and political contexts. We examine how each country, and particularly England, deals with the conflict between the principles of promoting the rights of people living with disabilities and preserving women’s reproductive autonomy. (shrink)

Cost effectiveness analysis is a tool for evaluating the aggregate benefits of medical treatments, health care services, and public health programs. Its opponents often claim that its use leads to unfair discrimination against people with disabilities. My aim in this paper is to clarify the conditions under which this might be so. I present some ways in which the use of cost effectiveness analysis can lead to discrimination and suggest why these forms of discrimination may be unfair. I also (...) discuss some proposals for avoiding discrimination without rejecting cost effectiveness analysis altogether. I argue that none of these proposals is ultimately convincing. I describe a different approach to the problem and conclude by answering the question in the title. (shrink)

To some students with disabilities who take philosophy classes, and even to some professors with disabilities who teach philosophy, the discipline is not welcoming. Philosophical theory traditionally recognizes so-called normal people and common modes of functioning but seems to ignore or disparage biologically anomalous individuals. The adequacy of our epistemological and ethical philosophies is a pressing reason for us to acknowledge disability in philosophical theorizing. And there are equally pressing reasons to acknowledge that students with various kinds of (...) disabilities are members of our classes. In this special issue of Teaching Philosophy the authors reflect on how disability is engaged with in their philosophy classrooms for and by their students, and in the philosophy they teach. (shrink)

The partnership of educators and parents of children with developmental disabilities is important for early intervention, as an integrated and interdisciplinary system of professional services intended for children of an early age with developmental disabilities and children who may be late in starting school due to inadequacy: nutrition, chronic diseases, biological and environmental factors. The aim of the research is to examine the assessments of educators and parents about the involvement of families of children with developmental disabilities (...) in kindergarten activities. It started from the general assumption that there is a difference in the assessments of educators and parents about family involvement in kindergarten activities. The research conducted in October 2022 included 167 educators and 167 parents in the area of Kikinda and Sombor (Serbia), who assessed family participation in kindergarten activities (PP) for 167 children aged five to seven. The quality of cooperation was examined with the Subtest Parents’ involvement in kindergarten activities. This subtest forms part of the Parental Involvement Questionnaire (Fantuzzo et al, 2000) adapted for this research (a = 0,921). The research results show that there is a significant difference in the assessments of educators and parents in the area of family involvement in kindergarten activities. It was concluded that there is a need for planning guidelines and implementation of procedures that would enable parents to participate in kindergarten activities. The application of the new Program Basis in the context of cooperation between preschool institutions and parents would contribute to the improvement of project planning of learning and teaching in pedagogical practice. This would help parents better understand project-based learning and the importance of participating in kindergarten activities. (shrink)

Rehabilitation for disabled children requires long-term programmeswhich are expensive to the family. This study aimed to estimate the costincurred by caregivers’ children with disabilities from Pahang, Terengganu andKelantan participating in Community-Based Rehabilitation and cost of seeking alternative rehabilitation. Costanalysis using the Activity-Based Costing method was used to estimatetwelve-months’ expenditure in 2014 institutional year on 297 caregivers ofchildren with disability, aged 0 to 18 years who attended CBR. Data werecollected using a self-administered costing questionnaire and presentedin median. Results showed that (...) the median direct and indirect costs,excluding medications and alternative care were nearly four times as highin Home-Based compared to Centre-Based vs. RM608. Both groups of caregivers spent a significant amount ofresources on alternative rehabilitation. The high costs incurred for alternativerehabilitation is a major economic burden to the family. (shrink)

This article is an ethnographic analysis of the mutuality that is possible in relationships between caregivers and women with intellectual disabilities who live together in L'Arche homes. Creating mutuality through which both parties grow and exercise agency requires that caregivers learn to negotiate delicate power relations connected to the physics of care and to reframe dominant stereotypes of disability. This helps them to support the women with intellectual disabilities to name and achieve their desires.

MyJay is an open-source robot designed to facilitate play between children with and without physical disabilities. The robot acts as a proxy for children with upper limb challenges, allowing them to participate in physical games with their peers. Our design was inspired by the FIRST Robotics Competition, which involves teleoperating robots to manipulate objects. Taking a user-centred perspective, we consulted therapists and conducted remote interviews with children with disabilities and their guardians at various stages of the design process. (...) We then conducted an in-person feasibility study with 18 typically developing children in a school setting. The study involved children teleoperating the robot to pick up and throw balls into a designated goal, and the interaction was evaluated using the user experience questionnaire and the Robotic Social Attributes Scale. The results of the study show great potential for MyJay to act as a play mediator in various scenarios, and the response from the children was positive. The ultimate aim of our research agenda is to pave the way towards creating more inclusive play environments through robot-mediated interactions, breaking barriers posed by physical limitations. (shrink)

Shavelson and colleagues (2023) describe how medical aid-in-dying laws in the United States prohibit assistance in administering aid-in-dying medication. This prohibition distinguishes aid in dying...

The 1990 Americans with Disabilities Act enacted a conceptual shift in the meaning of ‘disability.’ Rather than defining ‘disability’ as a disadvantageous physical or mental deficit of persons, it codifies the understanding of ‘disability’ as a defective state of society which disadvantages these persons. In contrast, the standard medical model incorrectly conceptualizes disabled persons as biologically inferior, and thus confines them to the role of recipients of benevolence or care. Turning to an ethic of caring yields counter-intuitive results that (...) conflict with the conceptual apparatus of the ADA. It is argued that in order to liberate social thought from this medical model and thus move the disabled from being socially marginalized to being socially enabled, one must re-conceptualize current practice by adopting the ADA's conceptual framework. Keywords: caring, disability, equality, ethics, health care polic CiteULike Connotea Del.icio.us What's this? (shrink)