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)

The aim of this study was to investigate the experiences of persons with severe functional disabilities who receive personal assistance in their homes, the focus being on their daily life in relation to the ethical principles represented in the Swedish Disability Act: autonomy, integrity, influence and participation. Qualitative interviews were performed with 26 persons and thereafter subjected to qualitative latent content analysis. The experiences of personal assistance were very much in accordance with the said principles, the (...) most important factor being that one is met with understanding. The participants described situations in which their integrity was violated in that they were not treated as competent adults. This indicates the importance of future efforts in nursing to support personal assistants with ethical knowledge and supervision so that they can empower people with disabilities and thereby enable them to maintain their self-esteem and dignity. (shrink)

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)

BackgroundAs Canadian global health researchers who conducted a qualitative study with adults with and without disabilities in Uganda, we obtained ethics approval from four institutional research ethics boards (two in Canada and two in Uganda). In Canada, research ethics boards and researchers follow the research ethics norms of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2), and the National Guidelines for Research Involving Humans as Research Participants of Uganda (NGRU) in Uganda. The preparation and (...) implementation of this qualitative research raised specific ethical issues related to research participant privacy and the importance of availability and management of financial resources.Main bodyOur field experience highlights three main issues for reflection. First, we demonstrate that, in a global health research context, methodological and logistic adjustments were necessary throughout the research implementation process to ensure the protection of study participants’ privacy, especially that of people with disabilities, despite having followed the prescribed Canadian and Ugandan ethics norms. Data collection and management plans were adapted iteratively based on local realities. Second, securing financial support as a key aspect of financial management was critical to ensure privacy through disability-sensitive data collection strategies. Without adequate funding, the recruitment of research participants based on disability type, sex, and region or the hiring of local sign language interpreters would not have been possible. Third, although the TCPS2 and NGRU underscore the significance of participants’ privacy, none of these normative documents clearly express this issue in the context of global health research and disability, nor broadly discuss the ethical issue related to financial availability and management.ConclusionsConducting research in resource limited settings and with study participants with different needs calls for a nuanced and respectful implementation of research ethics in a global health context. We recommend a greater integration in both the TCPS2 and NGRU of global health research, disability, and responsible conduct of research. This integration should also be accompanied by adequate training which can further guide researchers, be they senior, junior, or students, and funding agencies. (shrink)

As a form of functional diversity, spinal cord injury expressed by tetraplegia is one of the most serious events that can impact people, affecting their family and socioeconomic life. The type of care relationship established in these cases will be essential for preserving autonomy. The objective of this study was to understand how care relationships influence the autonomy of people with tetraplegia and the dynamics that trigger practices of autonomy violation, maintenance and promotion. This research is inspired (...) by problematization as a methodology using the Arch of Maguerez as an analytical approach strategy that enables an engagement between empirical and theoretical data. Some models of care relationships identified in this study either promote or violate autonomy: the protectionist model, based on the biomedical interpretation model of disability and the bodily impediments caused by spinal cord injury; the participatory model, involving the patient's interest in adapting to their new condition of family and community life, seeking to understand the practical aspects of daily life; the sharing model, in which the complicity and understanding of new forms of bodily expression allow the caregiver to be almost an extension of the tetraplegic person's body; the delegate model, which occurs in relationships with professional caregivers; and the emancipatory model, which seeks to empower the patient, highlight potentialities, and encourage autonomy. The key components of these conceptual care models guided the elaboration of hypotheses for intervention with the objective of maintaining and promoting the autonomy of people with tetraplegia through supported care. (shrink)

The “expressivist objection” argues that prenatal screening leading to termination of embryos or fetuses with disabilities sends a harmful message to people with disabilities, such as the message that their lives are not worth living. I first argue that whether it sends such a message depends on how a reasonable person would see the motives behind the screening. I then argue that a reasonable person would see a harmful message, not when individuals terminate embryos, and (...) not for severe disabilities, but when the state allows the screening and termination of embryos with less severe conditions, such as Down syndrome. This sends the message that it is permissible not to pay a higher cost to support people with disabilities, when there is an abled alternative. This attitude is harmful to the welfare, rights and self-worth of people with disabilities because it reinforces the refusal to provide them with equal opportunity. The state therefore has a strong pro tanto reason to ban prenatal screening for less severe disabilities. (shrink)

A crucial question in relation to support designed to enable the legal capacity of people with mental disabilities concerns when support constitutes undue influence. This article addresses this question in order to facilitate the development of law and policy in England and Wales, by providing a normative analysis of the different approaches to undue influence across decisions about property, contracts, health, finances, and accommodation. These are all potential contexts for supporting legal capacity, and, in doing (...) so, the article compares approaches to undue influence that are rarely considered together. -/- Drawing on the UN Convention on the Rights of Persons with Disabilities, third sector and public body documents, and law in England and Wales, the analysis identifies six models that conceptualise undue influence in terms of: modes of influence; an overborne will; an inference from the situation; an overborne will understood as a mental incapacity; an overborne will in connection with vulnerability; and impaired discursive control. This final approach is a novel proposal for understanding undue influence. The analysis highlights key policy-relevant issues that distinguish the models, and generates a deliberative framework for navigating them, with the ‘overborne will’, ‘inference-based’, and ‘discursive control’ models identified as potentially fitting for the support context. (shrink)

This paper will explore the power of history in affecting contemporary caring practice. Drawing on the author's personal experience as a social worker, researcher and parent of a daughter with learning disabilities, the article will consider the ways in which the experience of (and to an extent, nostalgia for) the ?heady days? of de-institutionalisation continues to influence staff perceptions about their work. In doing so, this article will critique normative notions of choice and control that are at the (...) heart of current moves towards self-directed support and personalised services. The author contends that staff who support people who have learning disabilities need something with which to compare and validate their practice. In the 1980s the hospitals were easily identifiable as something negative with which practice ?in the community? could be compared. In the twenty-first century the need for a comparator is still there, but the hospitals and many of their associated structures such as Adult Training Centres have gone. The paper argues that the family can be a contemporary structure against which current practice can be measured. (shrink)

The Convention on the Rights of Persons with Disabilities (CRPD) came into force in 2008. People with disabilities, including people with psychosocial disabilities, were instrumental to its development. Article 12 and Article 14 of the CRPD, which respectively affirm the universal legal capacity and right to liberty of persons with disabilities, were viewed as key victories by disability rights movements. These provisions are particularly important for people with psychosocial (...) disabilities who are routinely subjected to human rights violations through psychiatric detainment and involuntary treatment authorized under domestic mental health legislation in many states. We aim to advance discourse surrounding the CRPD and its development by centring mad peoples’ voices and individuals with lived experience through a literature review and interviews with key disability rights advocates. Using Canada as a case study, we critically examine the implementation of the CRPD and the need to align mental health acts with our international human rights obligations. We argue that forced psychiatric interventions violate the rights of persons with psychosocial disabilities and cause inherent harm. There is an urgent need to move towards new paradigms of care that promote the dignity and autonomy of people with psychosocial disabilities. (shrink)

People with mild to moderate intellectual or multiple disabilities may have serious difficulties in accessing leisure events, managing communication exchanges with distant partners, and performing functional daily activities. Recently, efforts were made to develop and assess technology-aided programs aimed at supporting people in all three areas. This study assessed a new technology-aided program aimed at helping four participants with intellectual and multiple disabilities in the aforementioned areas. The program, which was implemented following a (...) non-concurrent multiple baseline across participants design, relied on the use of a smartphone or tablet connected via Bluetooth to a two-switch device. This device served to select leisure and communication events and to control the smartphone or tablet’s delivery of step instructions for the activities scheduled. Data showed that during the baseline phase, three participants failed in each of the areas while one participant managed to access a few leisure events. During the intervention phase, all participants managed to independently access leisure events, make telephone calls, and carry out activities. These results suggest that the program might be a useful tool for helping people with intellectual and multiple disabilities improve their condition in basic areas of daily life. (shrink)

This paper contrasts the personal experiences of a man with learning disabilities and autism with staff in two different settings: a long-stay institution for people with learning disabilities, and the community. These experiences highlight some of the potential personal, professional and ethical conflicts facing staff working in learning disability services.

The specialist field of intellectual disability nursing has been subjected to a number of changes since the move towards deinstitutionalisation from the 1970s. Government policies sought to change the nature of the disability workforce from what was labelled as a medicalised approach, towards a more socially oriented model of support. Decades on however, many nurses who specialise in the care of people with intellectual disability are still employed. In Australia, the advent of the National Disability Insurance Scheme (...) offers an apt moment to reflect upon these decades of specialised nursing care as the context of this nursing care will continue to evolve. A review of the published literature was conducted to explore what has shaped the field in the past and how this might inform the future of this speciality area under new policy and service contexts. People with intellectual disability have specific health and support needs that require a specialised workforce. Specialist nurses continue to be needed for people with intellectual disability. (shrink)

The UN Convention on the Rights of Persons with Disabilities (CRPD) was passed in 2006 and came into force in 2008. It sets out a number of core values, including dignity, individual autonomy, non-discrimination, participation and community inclusion. Although the CRPD has been recognised as an important step forward by many disabled people and their supporters and provides the foundation for building a good life, the author argues that it does not necessarily equate with it. The (...) underpinning Western values of choice, independence and control are important, but leave out groups of marginalised people for whom these goals may not be achievable. They also present challenges and dilemmas for those involved in supporting/caring roles. In this paper, the author reflects on the implications of the CRPD for the lives of people with learning disabilities, in particular those with profound needs and explores whether it provides a genuinely coherent framework for an inclusive society. (shrink)

ContextPeople with mental disorders can acquire long-term disabilities, which could impair their functioning and quality of life (QoL), requiring permanent care and social support. Systematic data on QoL and functioning, which could support a better management of these people, were not available.ObjectiveTo analyze the QoL, level of functioning and their association with sociodemographic and clinical factors of people with mental disorders who underwent deinstitutionalization using assisted living facilities.MethodsA Cross-sectional study was conducted between (...) July 2018 and July 2019, through interviews using the World Health Organization Quality of Life (WHOQOL-BREF) to determine the QoL scores, and the World Health Organization Disability Assessment Schedule (WHODAS 2.0) to determine the level of functioning. All adults (≥18 years old) with mental disorders, who underwent deinstitutionalization, users of assisted living facilities and assisted by the Psychosocial Assistance Centers III, in a city in the state of São Paulo, Brazil, were selected. For statistical analysis of the associated factors, Student’st-test was used for dichotomous variables and ANOVA for polynomial variables. Pearson correlation coefficient was used to measure the association between QoL and functioning scores.ResultsOut of 359 people who underwent deinstitutionalization with mental disorders, 147 met the eligibility criteria. The mean total score for the WHOQOL-BREF was 66.5 ± 13.4 and the mean score for WHODAS 2.0 was 10.4 ± 7.6. An association was found between people who were studying (n= 65.8; 95%CI, 63.5–68.1vs. n= 73.9; 95%CI, 67.5–80.3;p= 0.04) and better WHOQOL-BREF QoL scores or WHODAS 2.0 levels of functioning (n= 10.9; 95%CI, 9.6–12.2vs. n= 5.1; 95%CI, 2.5–7.7;p= 0.01). A weak negative correlation (r= 0.41) emerged between higher QoL scores and functioning improvement.ConclusionThis study indicates that the QoL of the sample is associated by their functioning levels, which, in turn, may reflect on their social interactions. Public policies that favor interventions increasing socialization of this population can result in better health outcomes. The QoL and functioning scores provide valuable insights to develop public policies more suited to this population profile. (shrink)

Background: Self-determination is an important factor in improving the quality of life of people with moderate intellectual disabilities. A focus on self-determination implies that restraints on the freedom of people with intellectual disabilities should be decreased. In addition, according to the Dutch Care and Coercion bill, regular restraints of freedom, such as restrictions on choice of food or whom to visit, should be discouraged. Such restraints are only allowed if there is the threat of (...) serious harm for the clients or their surroundings. Research question: What do support staff consider as restraints on freedom and how do they justify these restraints? Research design: In this study, data were collected by semi-structured interviews. Participants and research context: Fifteen support staff working with clients with moderate intellectual disabilities were interviewed. All participants work within the same organisation for people with intellectual disabilities in the Eastern part of the Netherlands. Ethical considerations: The study was conducted according to good scientific inquiry guidelines and ethical approval was obtained from a university ethics committee. Findings: Most restraints of freedom were found to be centred around the basic elements in the life of the client, such as eating, drinking and sleeping. In justifying these restraints, support staff said that it was necessary to give clarity in what clients are supposed to do, to structure their life and to keep them from danger. Discussion: In the justification of restraints of freedom two ethical viewpoints, a principle-guided approach and an ethics of care approach, are opposing one other. Here, the self-determination theory can be helpful, while it combines the autonomy of the client, relatedness to others and the client’s competence. Conclusion: Despite the reasonable grounds support staff gave for restraining, it raises the question whether restraints of freedom are always in the interest of the client. (shrink)

Background Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we (...) address this gap by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Discussion Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. Summary This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of – or revisions to – a regionalised health care strategy. (shrink)

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step (...) model that specifies the necessary conditions of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research. (shrink)

Supporting families of people with developmental disabilities from culturally diverse backgrounds is receiving increased attention in the era of globalisation. However, there is little information about how disability policy and cultural values work together to support families. This article examined how disability policy and Chinese cultural values influence family care of children and young people with developmental disabilities. By comparing qualitative interview data from Chinese families in Taipei (15) and Sydney (10), we analysed (...) how their expression of cultural values in family care differs by policy context, relative to ethics of care claims for recognition, rights and redistribution. We found that positive expressions of Chinese culture in family care fade if policies do not complement them. Policies can alleviate potential tension with cultural values in three ways: reinforcing family capacity to care; ensuring the rights of both family caregivers and people with disabilities; and extending care choices for families. These approaches resonate with ethics of care principles. We argue that culturally responsive disability policy for families means working with cultural values to achieve ethics of care. This implies that incorporating principles of ethics of care could inform cultural responsiveness in disability policy development. (shrink)

The Covid-19 pandemic has put a strain on the health system, as well as the social, economic, and cultural ones at the Global level. After the pandemic, the risk is that the process of inclusion of persons with disabilities is grinding to a halt. But the chance is to find new ideas. This paper will define a brief but significant framework of principles that should be taken into consideration in order to support strategies of inclusion of (...) class='Hi'>people with disabilities in the fields of health care and cultural life, especially through the research. (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)

Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to (...) decision-making and their views on supported decision-making. Thirty-six interviews were undertaken with fifty-seven participants across three states in Australia. Interpretative Phenomenological Analysis was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population. (shrink)

This article aims to explore the conditions of people with disability (PwD) integration through the analysis of best practices of a successful Indian company that has adopted a singular PwD involvement policy since it was started. Our research question can be stated as follows: ‘What enablers or factors helped Vindhya in the successful inclusion of PwDs and simultaneously achieve commercial success?’ An exploratory study consisting of data triangulation of secondary data and in-depth interviews was done to get a (...) detailed and deep understanding of the company’s successful inclusion of disabled employees. We found that a transformational leadership style prevents prejudice and expands the horizon of PwD’s capability. This is concretely implemented through a set of organizational practices involving communication, ambience, relationships, empathy, ethics and other aspects that are highlighted in this article. We briefly call the overall approach of the company ‘CARE’ (Communication, Ambience, Respect/Relatedness with employees/Recruitment, Ethics/Empathy/Enthusiasm/Engagement). The adoption of CARE-organizational practices at the studied company increased the capability set of PwDs, enhanced organizational citizenship behaviour and, as a whole, improved the organizational performance. (shrink)

Intellectual disability leads to a loss of autonomy and a high level of dependence, requiring support from another person permanently. Therefore, it is necessary to incorporate the assessment of caregiver burden in healthcare actions, to avoid putting the health of caregivers and patients at risk. In this sense, the study aimed to analyze the internal structure of the Zarit Burden Interview (ZBI) in a sample of caregivers of people with intellectual disabilities, to provide convergent and discriminant (...) evidence with a measure of the risk of maltreatment, and to estimate the reliability of the scores from the Classical Test Theory and the Rasch Measurement Theory. The study was instrumental. The sample consisted of 287 Peruvian informal primary caregivers of persons diagnosed with intellectual disabilities. To collect validity evidence, the internal structure (confirmatory factor analysis, CFA) and the relationship with other variables (convergent and discriminant evidence) were used, while reliability was estimated through the omega coefficient and Rasch analysis. The internal structure of the ZBI corroborated a unidimensional structure. In terms of convergent and discriminant evidence, the scale presents adequate evidence. Reliability levels were also good. Previously, the psychometric properties of the ZBI have not been studied in caregivers of people with intellectual disabilities, and it represents the first study of the scale in Peru. The results obtained will allow the use of this scale to design actions in the work with caregivers and studies to understand the psychology of the caregiver. (shrink)

BackgroundThe UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer’s disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD (...) but has only succeeded in improving understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the ‘spatial intervention study’ of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent. MethodsPeople with a suspected or confirmed diagnosis of dementia in Alzheimer’s disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed.DiscussionThe results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice.Trial registration: DRKS00030799. (shrink)

The purpose of this study was to investigate what strategies people with severe functional disabilities who receive personal assistance in their homes use in their daily life to achieve autonomy, integrity, influence and participation. Qualitative interviews were carried out and subjected to qualitative latent content analysis. The main finding was expressed in terms of six subthemes: trying to keep a private sphere; striving to communicate; searching for possibilities; taking the initiative; striving to gain insight; and using one's (...) temperament. These generated the overall theme: maintaining dignity in close relationships. This study contributes an understanding of the strategies used by people who are dependent on personal assistance. Future efforts in nursing must focus on supporting personal assistants with ethical knowledge and guidance in order that people with severe functional disabilities are empowered to achieve autonomy, integrity, influence and participation in their daily lives. (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)

ABSTRACT Amartya Sen’s capability approach is often used in disability research as a normative framework for describing and evaluating the well-being of people with disabilities. Nevertheless, recently, the possibility of going beyond description to the use of the capability approach as an explanatory tool has been raised. However, to allow the use of the capability approach in this way requires grounding it in an appropriate research paradigm. In this paper, critical realism is adopted for this purpose. It (...) is argued that critical realism can provide the ontology needed to justify finding explanations for the way that people with disabilities achieve their valued capabilities. The assumption here is that there are real, emergent structures and mechanisms that underlie empirical capabilities; and that these structures and mechanisms are related to people’s agency, as described by critical realism’s conception of the relationship between structure and agency. (shrink)

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 (...) class='Hi'>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)

Shaming is defended by some as a necessary measure of social control. But shaming is unjust to the extent that it is disproportionate, and largely counterproductive. While much progress has been made, people with disabilities are still frequently at the receiving end of shaming. This is manifest in disregard for accommodation requests, condescending attitudes and overall lack of empathy towards people with disabilities. These trends are also manifest in clinical settings. Medical staff and healthcare (...) workers need to seriously consider this state of affairs and embrace attitudinal changes and policies that contribute to a more welcoming atmosphere towards the disabled, and consequently curb the shaming to which they have been traditionally exposed. (shrink)

L’article explore la question de la politique d’emploi et le fonctionnement du système de soutien à l’activité professionnelle des personnes en situation de handicap mental en Pologne. Les analyses sont basées sur des données provenant d’un projet de recherche plus large: Emploi et handicap. Reconstructions des expériences professionnelles des personnes en situation de handicap mental en Pologne. L’objectif du projet était de connaître la situation professionnelle de ces personnes en termes de politique d’emploi, de pratiques d’accompagnement sur les lieux de (...) travail et d’expérience professionnelle des salariés handicapés, de leurs accompagnateurs et des coordinateurs de projets de soutien professionnel. Le cadre méthodologique du projet s’appuie sur la théorie ancrée, basée sur le constructivisme social, dans la version présentée dans les travaux de K. Charmaz, l’analyse du discours et l’analyse sociologique des pratiques. Le matériau de recherche a été collecté dans 25 lieux de travail de personnes handicapées, dans différentes régions de Pologne, principalement au moyen d’entretiens approfondis, d’observations et de notes de terrain. Les analyses portant sur de la politique d’emploi polonaise indiquent une promotion de l’activité professionnelle des personnes en situation de handicap mental. Cependant, sa mise en œuvre est difficile. Les difficultés résultent de la mauvaise qualité du droit régissant l’activité professionnelle, de l’absence de solutions législatives adéquates, de barrières au niveau des employeurs et de l’absence de soutien financier suffisant. (shrink)

Philosophical interest in disability is rapidly expanding. Philosophers are beginning to grasp the complexity of disability--as a category, with respect to well-being and as a marker of identity. However, the philosophical literature on justice and human rights has often been limited in scope and somewhat abstract. Not enough sustained attention has been paid to the concrete claims made by people with disabilities, concerning their human rights, their legal entitlements and their access to important goods, services and (...) resources. This book discusses how effectively philosophical approaches to distributive justice and human rights can support these concrete claims. It argues that these approaches often fail to lend clear support to common disability demands, revealing both the limitations of existing philosophical theories and the inflated nature of some of these demands. Moving beyond entitlements, the author also develops a unique conception of dignity, which she argues illuminates the specific indignities experienced by people with disabilities in the allocation of goods, in the common experience of discrimination and in a wide range of interpersonal interactions. Disability with Dignity offers an accessible and extended philosophical discussion of disability, justice and human rights. It provides a comprehensive assessment of the benefits and pitfalls of theories of human rights and justice for advancing justice for the disabled. It brings the moral importance of dignity to the centre, arguing that justice must be pursued in a way that preserves and promotes the dignity of people with disabilities. (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.

It is now broadly accepted that disability is a concept infused with both descriptive and evaluative meaning, such that invoking the concept of disability necessarily involves making judgements of moral value as well as describing certain facts about individuals. This paper aims to map the complex terrain that shapes our current understandings of disability by outlining five distinct ‘discourses of disability’. It is shown how the similarities and differences between the discourses hinge on different ways of making sense of (...) the descriptive and evaluative dimensions of the concept, and the relationships between these dimensions. The paper concludes by considering the specific implications that these different ways of elucidating the concept of disability might have for the provision of clinical ethics support, both in terms of shaping ethical decision-making relating to people with disabilities and in terms of framing the process of providing clinical ethics support itself. (shrink)

In line with public policies, the French Association of Paralyzed People (APF) promotes the social participation of people with disabilities. This objective can be achieved both through participation in activities and participation in decision-making processes. This dual categorisation raises questions about the compatibility of logics of support and program objectives across these two facets of participation. Arising from work conducted in the context of a PhD dissertation, this article is based on document analysis and (...) 49 indepth interviews with employees, volunteers, members and users of the APF. The results highlight a tension, from the point of view of professional supports, between participation in activities and participation in decision-making. For the sake of swift and tangible results, professionals are encouraged to offer activities and services to achieve faster and more effective social participation. However, this places them in a complex, or even inextricable, position when it comes to enhancing users’ participation in decision-making. (shrink)

This paper considers the range of possible policy options that are available if we wish to attempt to treat people with cognitive disabilities as equal members of society. It is suggested that the goal of policy should be allow each disabled person to establish a worthwhile place in the world and sets out four policy options: cash compensation, personal enhancement, status enhancement and targeted resource enhancement. The paper argues for the social policy of targeted resource enhancement for (...) individuals with cognitive disabilities, in the form of providing cash with some limits on its use. Taking the example from the UK of ‘self-directed support’ it is argued that such policies can be cost-effective and advance the autonomy of people with cognitive disabilities, especially when compared with current policies of centrally provided services. (shrink)

It is commonly held that there are both cases in which there is a strong moral reason not to cause the existence of a disabled person and cases in which, although it would be permissible to cause a disabled person to exist, it would be better not to. Yet many disabled people are affronted by the idea that it is sometimes better to prevent people like themselves from existing, precisely because these people would be disabled. One of (...) their grounds for concern, which will be my particular focus in this paper, is that claiming that there are reasons to prevent the existence of disabled people may be expressive of a demeaning and hurtful view of the status of existing disabled people, a view that may encourage discriminatory attitudes towards and treatment of the disabled. I will contend that there can indeed be moral and prudential reasons for preventing the existence of a disabled person. But I will argue that it is less obvious than many people assume what, if anything, the recognition of these reasons expresses about disabled people. And I will contend that, even if the recognition of these reasons does express a perception of disabled people that is potentially hurtful, this effect could be offset by the social expression of a contrary view that I will claim is in fact compatible with and equally valid as the potentially hurtful view. Whether it may be morally objectionable to cause a disabled person to exist depends, in part, on whether the person’s life would be worth living. If it is ever objectionable to cause a disabled person to exist, the objections are surely strongest when the person’s life would be “worth not living” – that is, would have aspects or features that would be bad for the person and that would decisively outweigh those, if any, that would be good. Such cases are, however, quite rare. Indeed, some people question whether there are any disabilities so severe as to cause life to be worth not living. It can be argued that disability involves only the absence of certain abilities and that mere deficits.... (shrink)

This article aims to present the problem of the impact of artificial intelligence on respect for human dignity in the sphere of care for people who, for various reasons, are described as particularly vulnerable, especially seniors and people with various disabilities. In recent years, various initiatives and works have been undertaken on the European scene to define the directions in which the development and use of artificial intelligence should go. According to the human-centric approach, artificial intelligence (...) should be developed, used and monitored with people in mind, their needs and rights. It is artificial intelligence that should adapt to the rules set by people, not the other way around. The source of all human rights and freedoms is respect for human dignity. This is evidenced by numerous European, international, national regulations and documents. Respecting this value is also one of the works on the AI development. One of the areas of our life into which AI enters more and more boldly and which in the near future, due to demographic reasons and aging population, may be almost dominated by modern technologies, is the medical and care system. The usefulness of industrial co-robots made us think about the possibility of using similar devices in the non-industrial sphere, including in the sphere of care, nursing and therapy. Actually, despite the impressive development of technology and AI, intelligent robots/devices used for care, nursing or therapy (so-called care/nursing or therapy robots) perform rather simple activities. They provide information, navigate, bring something and give it (e.g. medicines, food), help to get up. They are an important support for medical staff in this respect. Performing tasks that are more complex in terms of technology and movement, such as feeding, washing, intimate hygiene, dressing or undressing, is still beyond the reach of the currently used robots. The question we must ask ourselves is whether, in the future, care robots will be able to perform such tasks, and should they do so? Will this lead to the replacement of human medical personnel in the performance of the above-mentioned activities with such robots. Would anyone want to be "looked after" by a soulless machine? Should potential wards/patients, in other words all of us in fact, have the right to object to being taken into the care of an intelligent robot? There is no doubt that intelligent robots have great potential, especially when it comes to ensuring or maintaining the independence or mobility of people with various health limitations. However, we must not forget about the risks and dangers they may generate. Even a simple robot generates serious legal and ethical problems. Who should be liable for damage caused in connection with improper care performed with the participation of a robot? Robots based on AI systems are able to collect a significant amount of sensitive data, for example through the face and speech recognition function. There is considerable scope for abuse in this area, not only in terms of personal data protection but also in terms of informational self-determination, privacy and dignity. Bearing in mind the above risks, the creation of a new right to object to being looked after by a robot should be considered. (shrink)

Disabled people frequently find themselves in situations where their quality of life and wellbeing is being measured or judged by others, whether in decisions about health care provision or assessments for social supports. Recent debates about wellbeing and how it might be assessed (through subjective and/or objective measures) have prompted a renewed focus on disabled people’s wellbeing because of its seemingly ‘anomalous’ nature; that is, whilst to external (objective) observers the wellbeing of disabled people appears poor, based (...) on subjective assessments, people with disabilities report a good quality of life. In this paper, I examine an article by the philosopher Dan Moller in which he seeks to explain this ‘disability paradox’. Despite agreeing with his analysis that there is more to what people value than happiness, his explanation reflects some of the difficulties presented in philosophical accounts which seek to understand the lives of disabled people: this includes an analysis which fails to problematise definitions of wellbeing and who has the ‘voice’ to do the defining; which negates the multiple identities and subject positions that disabled people occupy; and which lacks recognition of the social contexts which mediate disabled people’s lives. I suggest that there is a need to incorporate disabled people’s voices into research which deepens our empirical knowledge about the relationship between impairment and wellbeing, including the social circumstances that shape disabled people’s agency. (shrink)

Assisted dying is a divisive and controversial topic and it is therefore desirable that a broad range of interests inform any proposed policy changes. The purpose of this study is to collect and synthesize the views of an important stakeholder group—namely people with disabilities —as expressed by disability rights organisations in Great Britain. Parliamentary consultations were reviewed, together with an examination of the contemporary positions of a wide range of DROs. Our analysis revealed that the vast (...) majority do not have a clear public stance; those that do exhibit a significant diversity of opinion. DROs opposing legislation on assisted dying have argued that it would be premature, misguided, inequitable and culturally undesirable. Some specify conditions that would have to be satisfied before they could support legalisation, such as radical improvements in health and social care services and the elimination of discrimination against PwD. DROs supporting assisted dying maintain that a change in the law would promote autonomy, end intense suffering, can be delivered safely and is supported by the DRO’s membership. The discussion considers the reasons why several DROs adopt a neutral stance and the argument is made that, whatever their overarching stance on the issue, DROs need to be involved in the policy debate so that the crucial perspectives of PwD are heard and addressed. This is an important message for countries around the world that permit, or are considering legalising, assisted dying. (shrink)

With an eye ultimately to answering the question of how business can alleviate poverty completely, the paper examines existing arguments about the approach of business to poverty reduction with the case of people with disabilities living in poverty in Vietnam. The paper suggests that business should take the knowledge and potential of poor people into consideration in its interfaces with different types of poor people: consumers, workers, property owners, etc. Furthermore, investigating how (...) business can help reduce poverty while still earning a profit and ensuring customer satisfaction limits research on business approach to poverty, since it assumes that business will have some “not-for-profit” purposes. The findings point out that businesses with “not-for-profit” purposes serve as a promising area for further exploration and research of business approach to poverty alleviation. (shrink)

Law 49/2018, of August 14, created the Portuguese legal regime of the assisted decision-making (capacity), thus eliminating the legal institutes of interdiction and disqualification, provided for in the Civil Code (CC). The aim of this legal regime was to embed a new vision of disability based on a model of rights, that grants people with disabilities an independent and autonomous life and reflects the acceptance of the International Convention on the Rights of Persons with Disabilities (...) (CRPD) guidelines. This paper intends to discuss the ‘new’ Portuguese legal system regarding the legal capacity of persons with disabilities and its role in valuing the expression of the real will of people with disabilities. (shrink)

Research has documented the influence of ALS patients families’ attitudes on patients’ decision to accept or reject TIV, a treatment that in many cases will allow them to live long enough to experience locked-in syndrome ; under Japanese law the use of a ventilator cannot be terminated once it is essential to a patient’s survival, so to choose TIV means to choose the possibility of entering a locked-in state. Previous studies have not, however, elucidated the changes in family members’ attitudes (...) that take place after they receive pertinent information about the social systems and services available to them. This study aims to fill this gap by collecting and analyzing patients’ and family members’ narratives. In Japan, about 30% of ALS patients utilize TIV. This rate is much higher than in most other developed countries. Patients’ narratives illuminate the psychological and especially the contextual factors of their decision-making. Many Japanese patients who currently use a ventilator say that their family members encouraged them to prolong their lives through ventilation. These family members have done so because patients are able to use long-term ventilation for only ¥1000 per month, and can also access the latest communication devices and round the clock caregiver services in their homes at very low cost. Japanese caregivers who are supported by social systems and services including communication assistance, empowering factors such as patients’ associations, care provided by people outside the patient’s family, and a public nursing care system are able to encourage patients to decide to use longterm ventilation. (shrink)

My paper explores the question of when it is wrong for a state’s immigration criteria to discriminate against people with disabilities, focusing on the idea that discrimination is wrong when it demeans a group, rather than when it disadvantages them. I argue that selecting against people with disabilities often demeans them but might not always do so even when immigration criteria explicitly exclude people on the basis of having disabilities – that is, (...) in cases of direct discrimination. Moreover, I demonstrate that certain cases of less direct forms of discrimination that select against people with disabilities – in particular, when states apply health-cost limits on admissions – can function as proxies designed to exclude people with disabilities and thereby demean them. Finally, I explain why my analysis of discrimination’s wrong does not typically apply to health conditions in general, such as heart, liver, or lung disease or cancer, setting my view apart from a prominent view in the literature. (shrink)

This collection pays tribute to Jerome E. Bickenbach’s work that spans from philosophical and sociological issues to international legislation designed to support the rights of people with disabilities. Eight essays critically engage with Bickenbach’s work to further advance the discussions he has initiated throughout his career.

Some prominent contemporary ethicists, including Peter Singer and Jeff McMahan, do not consider human beings with profound intellectual disabilities to have the same moral status as “normal” people. They hold that individuals who lack sufficiently sophisticated cognitive abilities have the same moral value as nonhuman animals with similar cognitive capacities, such as pigs or dogs. Their goal—to elevate the moral standing of sentient nonhuman animals—is an admirable one which I share. I argue, however, that their strategy (...) does not, in fact, achieve this goal and that there are better ways to advance it than to attach lesser value to the lives of profoundly intellectually disabled persons. (shrink)

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, critics (...) claim that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective. (shrink)