What's Good About Inclusion? An Ethical Analysis of the Ideal of Social Inclusion for People with Profound Intellectual and Multiple Disabilities.

'Social inclusion' is the leading ideal in services and care for people with intellectual disabilities in most countries in the Global North. 'Social inclusion' can refer simply to full equal rights, but more often it is taken to mean something like 'community participation'. This narrow version of social inclusion has become so ingrained that it virtually goes unchallenged. The presumption appears to be that there is a clear moral consensus that this narrow understanding of social inclusion is good. However, that moral consensus is not clear in the case of people with profound intellectual and/or multiple disabilities (PIMD), who are not able to express their needs and preferences verbally. Moreover, social inclusion has proven to be difficult to conceptualize and implement for people with PIMD. Therefore, it becomes imperative to ask about the ethical rationale of the narrow understanding of social inclusion. For what reasons do we think social inclusion is good? And do those reasons also apply for people with PIMD? This article addresses these questions by providing an ethical analysis of the ideal of social inclusion for people with PIMD. It discusses four ethical arguments for social inclusion and probes their relevance for people with PIMD. The article argues that none of these arguments fully convince of the value of the narrow understanding of social inclusion for people with PIMD. It ends with advocating for an ethical space for imagining a good life for people with PIMD otherwise.

Social inclusion revisited: sheltered living institutions for people with intellectual disabilities as communities of difference.

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.

COVID-19 IDD: Findings from a global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare.  Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff.  Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

The group home as moral laboratory: tracing the ethic of autonomy in Dutch intellectual disability care.

This paper examines the prevalence of the ideal of "independence" in intellectual disability care in the Netherlands. It responds to a number of scholars who have interrogated this ideal through the lens of Michel Foucault's vocabulary of governmentality. Such analyses hold that the goal of "becoming independent" subjects people with intellectual disabilities to various constraints and limitations that ensure their continued oppression. As a result, these authors contend, the commitment to the ideal of "independence" - the "ethic of autonomy" - actually threatens to become an obstacle to flourishing in the group home. This paper offers an alternative analysis. It does so by drawing on a case study taken from an ethnographic study on group home life in the Netherlands. Briefly put, the disagreement stems from differing conceptualizations of moral life. Put in the vocabulary of moral anthropologist Cheryl Mattingly, the authors propose to approach the group home more from a "first-person" perspective rather than chiefly from a "third-person" perspective. They then draw on Mattingly to cast the group home as a "moral laboratory" in which the ethic of autonomy is not just reproduced but also enacted, and in which the terms of (in)dependence constantly get renegotiated in practice. What emerges is not only a new perspective on the workings of the "ethic of autonomy" in the group home, but also an argument about the possible limitations of the vocabulary of governmentality for analysing care practices.

What is the problem of dependency? Dependency work reconsidered.

Dependency is fundamental to caring relationships. However, given that dependency implies asymmetry, it also brings moral problems for nursing. In nursing theory and theories of care, dependency tends to be framed as a problem of self-determination-a tendency that is mirrored in contemporary policy and practice. This paper argues that this problem frame is too narrow. The aim of the paper is to articulate additional theoretical 'problem frames' for dependency and to increase our understanding of how dependency can be navigated in practices of long-term care. It does so by way of an empirical ethical analysis of how care professionals tackle the problem of dependency in group homes for people with intellectual disabilities. The paper refers to these practices of mitigating the problem of dependency as 'dependency work', a phrase borrowed from Eva Kittay. The analysis of dependency work suggests that for care professionals, dependency is a threefold problem: one of self-determination, one of parity and one of self-worth. These findings suggest that patient autonomy cannot be a full solution to the problem of dependency in long-term care relations. But they also show that dependency as such is not a problem that can be solved, as attempts to mitigate it only serve to tighten the dependency relationship further. This is the paradox of dependency work.

COVID-19 IDD: A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.

Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

The care receivers perspective: How care-dependent people struggle with accepting help from family members, friends and neighbours.

In many countries in north-western Europe, the welfare state is changing, and governments expect a great deal of informal care. In the Netherlands, citizens are also increasingly expected to rely on informal instead of professional care. In this study, we aim to determine to what extent Dutch care-dependent people want to rely on social network members and what reasons they raise for accepting or refusing informal care. To answer this question, we observed 65 so-called 'kitchen table talks', in which social workers assess citizens' care needs and examine to what extent relatives, friends and/or neighbours can provide help and care. We also interviewed 50 professionals and 30 people in need of care. Our findings show that a great deal of informal care is already given (in 46 out of 65 cases), especially between people who have a close emotional bond. For this reason, people in need of care often find it difficult to ask their family members, friends or neighbours for extra assistance. People are afraid to overburden their family members, friends or neighbours. Another reason people in need of care raise against informal care is that they feel ashamed of becoming dependent. Although the government wants to change the meaning of autonomy by emphasising that people are autonomous when they rely on social network members, people who grew up in the heyday of the welfare state feel embarrassed and ashamed when they are not able to reciprocate. Our findings imply that policymakers and social professionals need to reconsider the idea that resources of informal care are inexhaustible and that citizens can look after each other much more than they already do. It is important that social policymakers approach the codes and norms underlying social relations more cautiously because pressure on these relations can have negative effects.