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The good life for citizens with intellectual disability

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... Nesta perspetiva evolutiva, a Convenção sobre os Direitos das Pessoas com Deficiência (doravante designada por Convenção; NAÇÕES UNIDAS, 2007) traduz a mudança de atitudes e de perceções relativamente à deficiência. Segundo REINDERS (2002), os direitos criam espaço para a ação, na medida em que geram oportunidades para os indivíduos assumirem novos papéis na sua comunidade e participarem ativamente em todos os domínios da sua vida. No entanto, somente o reconhecimento dos direitos das pessoas com deficiência não é suficiente, sendo necessárias oportunidades para exercerem esses direitos (VERDUGO et al., 2012). ...
... Ainda no microssistema, frisa-se a importância das interações que se estabelecem, nos múltiplos contextos de vida, para o direito da autodeterminação. As relações são fundamentais para as pessoas com deficiência, sendo que deve existir uma mudança cultural neste domínio (REINDERS, 2002). Os resultados do estudo de MILLER e CHAN (2008) sugerem que a qualidade e quantidade de relações interpessoais contribuem para a satisfação que as pessoas com deficiência sentem sobre a sua vida. ...
... Esta forma de pensar envolve uma mudança de mentalidades. REINDERS (2002) advogou que a Voltar ao índice inclusão das pessoas com deficiência só existe quando todos os elementos da comunidade as incluírem nas suas próprias vidas, como pessoas iguais. A autora defende uma mudança cultural na própria natureza humana, no sentido de se perceber a importância dos laços sociais e de amizade com todos. ...
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O presente ensaio tem como objetivo analisar o direito à autodeterminação, consignado na Convenção sobre os Direitos das Pessoas com Deficiência. O ponto central consiste na reflexão sobre a autodeterminação como preditora dos direitos e da qualidade de vida das pessoas com deficiência. A tónica é colocada no desenvolvimento dos apoios, formais e informais, prestados nos múltiplos sistemas onde estas pessoas participam (i.e., micro, meso e macro). As conclusões apontam para um longo trabalho que deve ser desenvolvido no contexto português, destacando-se a necessidade de uma mudança da cultura, das políticas e dos serviços. Em síntese, é premente que a Convenção seja um veículo defensor da autodeterminação das pessoas com deficiência, destacando-se o exercício da sua capacidade jurídica. Por conseguinte, a sua implementação deve basear-se num constructo que monitorize o pleno exercício dos direitos, de forma transversal, objetiva e sustentável.
... They have been physically segregated in institutions and segregated community based services (Rioux et al., 1997). Many people with an intellectual disability continue to be seen as incapable of participating or contributing to society or the economy; this questions their status as full community members and citizens (Reinders, 2002;Stainton, 2005;Young & Quibell, 2000). Positive accounts of inclusion and participation are not readily reported in the literature or the popular media. ...
... Work by Hans Reinders (2002), suggests that we need to go beyond the practical approaches of support to building supportive relationships with people with an intellectual disability. This he calls "civic friendships". ...
... The UN has an impressive history of leadership in progressing the rights of people with disabilities and reports suggest people with a disability are very encouraged by the current convention (Disabled People International, 2007). However, it is important to note that legislation of rights does not in itself lead to fulfilment of these rights (Nagler, 1993;Young & Quibell, 2000), and some things like friendships, attitudinal change and full citizenship rely on more than legislation to be fulfilled (Reinders, 2002 For people with intellectual disabilities realising equal rights is perhaps an even harder task given their lack of involvement in much of this legislative change. In Victoria, self advocates were poorly represented in the legislative review process, being represented by peak organisations without direct representation of self advocates or self advocacy groups (Frawley, 2006b (Deal, 2006) proposes that there exists a hierarchy of disability within the community of people with a disability. ...
... Care workers and the people they support needed a genuine social network to ensure they have access to opportunities to form friendships and participate in meaningful social activities. Reindeers (2002) believes that it is not only citizenship but also friendship that matters. For both people with intellectual disabilities and care workers, inclusion will remain elusive and problematic without supported social networks (Reindeers 2002) since "inclusion is something that must be felt rather than enforced" (Stainton 2017, 1). ...
... Reindeers (2002) believes that it is not only citizenship but also friendship that matters. For both people with intellectual disabilities and care workers, inclusion will remain elusive and problematic without supported social networks (Reindeers 2002) since "inclusion is something that must be felt rather than enforced" (Stainton 2017, 1). ...
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Friendship and social connections generally improve quality oflife and well-being. However, research shows that people with intellectualdisabilities face challenges forming and maintaining friendships. Disabilitysupport workers play an indispensable yet under-recognized role indeveloping friendships with people with intellectual disabilities. Becausedisability support workers are disproportionately immigrant women, as theyfacilitate the inclusion of their clients, they too experience social isolation.After conducting in-depth interviews with disability support workers livingin Edmonton, Canada, for my master’s thesis project, I offer the followingobservations. First, staff and clients became friends with one another in partdue to weak family ties and limited social networks. Second, relationships thatfelt genuine helped staff better understand their clients and gave the staff adeeper sense of purpose in life. Third, the context, environment, and frequencyof meetings were essential for the development of friendships. Fourth,friendships among people both with and without disabilities were crucial forcommunity development. Overall, based on these interviews I suggest thatgenuine friendships between people with intellectual disabilities and careworkers can help foster a sense of belonging and are integral to community-building. My research also suggests that the meaning of friendship ought tobe expanded beyond current understandings.
... In particular, it is about building trust and connection across divides of age, gender, ability, race, and, we would add, species. In his study of work opportunities for people with intellectual disabilities, Hans Reinders found that formal inclusion in the workplace is of little or no benefit if individuals are not welcomed and befriended (Reinders 2002; see also Simplican 2015). And this in turn requires that we view social cooperation, not only through narrow conceptions of contribution focused on the production of marketable goods and services, but also through key dimensions of sociality and social cohesion such as our willingness to befriend, to participate, and to belong. ...
... Disability theorists have written about ideas of trust and friendship and conviviality as being central to the ethics of citizenship (Silvers and Francis 2005;Reinders 2002). As noted, the idea is not that this ethic replaces the willingness to ⁴⁵ These tendencies are, unfortunately, pathologized by many commentators-including some animal rights theorists-as servile and needy. ...
Chapter
Labour has been associated historically with a cluster of values, including individual security, self-development and freedom, social standing and recognition, and meaning. Insofar as these values are also relevant to animals, this suggests that we should seek to include animals into the world of labour. We should recognize that animals, as well as humans, are workers, and deserve access to the security, self-development, status, community, and purpose wrapped up in the role of being a worker. The reality, however, is that work life fails to deliver many of these goods, much of the time, for many people. Moreover, given technological development, there is no necessity for everyone to be a producer, and indeed the cultural expectation that everyone should be ‘productive’ is culturally pernicious and environmentally unsustainable. As a result, we see increasing discussion of a ‘post-work’ society. This chapter explores how animals fit into the emerging debate about the post-work society. It argues that animals can in fact be major beneficiaries of, and indeed exemplars of, this shift, engaging in socially beneficial activities that do not fit standard models of wage labour and economic production. Instead of bringing animals into our current work society, this chapter explores the possibility that animals could exemplify the ethics of a post-work world—one in which the values traditionally tied to ‘productive’ work are instead realized through new conceptions of community—being, doing, and taking care together.
... Although an unquestioned right-based commitment to social inclusion has progressed disability policy and practice, many people with intellectual disability still face barriers to social inclusion . Reinders (2002) argued that inclusion for people with disabilities relies more on their social networks rather than any declaration of their rights. Without welldeveloped and supported social networks, goals of inclusion for people with intellectual disability may remain elusive. ...
... This involves finding ways to support activities and participation with other people so that friendships can form and flourish. As Reinders (2002) articulately states: '. . .the real challenge that people with intellectual disabilities pose for us (is) not so much what we can do for them but whether or not we want to be with them. ...
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Background: People with intellectual disability often have few friends and experience social exclusion. Recognising this gap, supported social groups with the aim of inclusion and interdependence were created by a supported employment provider. Methods: Interviews were undertaken with 10 adults with intellectual disability exploring their lived experiences of a supported social group. Data were analysed using descriptive phenomenology. Results: Two themes emerged (i) supported engagement fosters wellbeing, and (ii) developing social belonging and connectedness. Participants not only acknowledged the support that they needed to participate, but also that the social group had changed their lives in many ways. Conclusions: Adults with intellectual disability want to socialise, have friends and be part of their community. For this to be achieved, they recognise the need to seek some form of support. With appropriate and targeted support, adults with intellectual disability can move from social exclusion towards supported inclusion and experience richer lives.
... Other benefits include more contact with family and friends and the local community. These findings dominate the literaturethat living in the community promotes improvements in adaptive behaviour, better quality of life and more community involvement (Stancliffe and Keane, 2000;O'Brien, Thesing and Tuck, 2001;Reinders, 2002;Emerson, 2004;Duffy, 2005). Reinders (2002) argues that living in the community is an experience and that a good life means being welcomed and accepted for who you are. ...
... These findings dominate the literaturethat living in the community promotes improvements in adaptive behaviour, better quality of life and more community involvement (Stancliffe and Keane, 2000;O'Brien, Thesing and Tuck, 2001;Reinders, 2002;Emerson, 2004;Duffy, 2005). Reinders (2002) argues that living in the community is an experience and that a good life means being welcomed and accepted for who you are. Stancliffe and Keane (2000) looked at the costs and outcomes of community living and found that people living in independent settings showed significant improvement in the 29 measures used in the study. ...
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Report Summary: Recent changes in the way young adults with learning disability and autistic spectrum disorders are being supported have led to the expansion of community based services in the UK health and social care practices. Various programmes are increasingly designed so as to achieve preferred outcomes for individuals in a supported lifestyle as well as other domains of everyday living. This report documents the introduction of supported living programmes and initiatives based on the government strategy of working in partnership with people with learning disabilities and other associated mental health difficulties. Aims: The aim of this report is to design a project to initiate the provision of social care services for (four) new service users that is based on the national minimum standard of care and will provide sustainable, healthy and safe, quality of care. It is our main objective to move the organisation forward by providing services that are specialist in nature especially in the area of Learning Disability and Autistic Spectrum Disorder. Secondly, to work with a range of interest group in identifying the most appropriate ways forward in the provision of quality service delivery for young adults with Learning Disability and Autism. Methods: This is a reportorial which took an initial iterative approach to finding relevant information in its literature review. It focused on English language materials published between 1989 and 2008. I conducted searches using web.EBSCOhost.com adopting a range of different search terms relating to supported living, assisted living, supported housing/ accommodation and person centred planning. Furthermore, a number of relevant journals as well as unpublished literature were systematically searched which all together yielded 353,839 hits. The method devised in initiating the project described in this report was based on the review of various relevant project management methodologies. Here I adopted a method managed under PRINCE 2, designed to meet the needs of new service users. Findings: Four new service users were successfully placed and provided care and support within a community based service. I succeeded in drawing my findings together using ideas in diagrams and tables to enhance the possible casual links of what transpired in the last 12 months.
... Johnson et al., 2010) and that we need to rethink our relation to adults with profound disabilities. FRIENDSHIP Reinders (2002), one of a number of ethicists and philosophers who have sought to articulate the potential of friendship to transform relations between people with ID (especially those with profound intellectual and multiple disabilities) and people without such disabilities (Hauerwas, 1998;Nouwen, 1997;Reinders, 2002;Vanier, 2005), 5 has noted that ". . . the real challenge that people with intellectual disabilities pose for us (is) not so much what we can do for them but whether or not we want to be with them. Ultimately, it is not citizenship, but friendship that matters" (p. ...
... Johnson et al., 2010) and that we need to rethink our relation to adults with profound disabilities. FRIENDSHIP Reinders (2002), one of a number of ethicists and philosophers who have sought to articulate the potential of friendship to transform relations between people with ID (especially those with profound intellectual and multiple disabilities) and people without such disabilities (Hauerwas, 1998;Nouwen, 1997;Reinders, 2002;Vanier, 2005), 5 has noted that ". . . the real challenge that people with intellectual disabilities pose for us (is) not so much what we can do for them but whether or not we want to be with them. Ultimately, it is not citizenship, but friendship that matters" (p. ...
Article
The authors analyzed references to “friendship” in the documents that set out the policy vision for adults with intellectual disabilities living in England. Friendship is commonly identified as one of the human “goods”—those aspects of life that contribute to our flourishing. Disability ethicists have suggested that friendship is especially important for people with the most profound intellectual and multiple disabilities, as a means of establishing their social and moral standing. However, the idea of friendship with adults with profound disabilities is problematic if friendship is defined as it is commonly understood in the contemporary English context. Citizenship and rights have dominated policy discourse since the publication of the English intellectual disabilities strategy, Valuing People, in 2001. However, recent policy documents give greater prominence to friendship and frame it explicitly as a “good” in the lives of adults with profound disabilities. The language used in these policy documents signals but does not openly acknowledge the tensions and complexities entailed in the idea of friendship with adults with profound disabilities. The authors suggest that the failure to address these tensions and complexities is a recipe for failure in the implementation of policy recommendations. They note the need for policy in this area to be reconsidered and suggest that this process should be informed by both empirical research and conceptual analysis.
... Key questions about the meaning and nature of social inclusion for people with challenging behaviour have not been empirically explored, though writers such as Clegg (2008), Reinders (2002), O ' Brien and O ' Brien (2002), and Carr et al. (1994) discuss these questions on value-based or philosophical planes. The paucity of empirical research suggests perhaps that the research community or those who commission and fund research may have accepted as an insurmountable fait accompli that challenging behaviour is " likely to seriously limit or deny access to and use of ordinary community facilities " (Emerson et al., 1987, as cited in Department of Health, 2007) and therefore warrants no further investigation. ...
... The small body of research about the social inclusion of people with challenging behaviour means there is a dearth of evidence on which to base decisions about specifi c psychosocial, behavioural, and clinical interventions or the organisation of programs to support social inclusion (Balogh, Ouellette-Kuntz, Bourne, Lunsky, & Colantonio, 2008;Gustafsson et al., 2009;Hassiotis & Hall, 2008;Prangnell, 2010). The likelihood that the type of evidence-based practice possible in medicine will ever be replicated in human services has been questioned, however (Gray, Platt, & Webb, 2009;Reinders, 2002 ;Pawson, 2006), and it may be that the fi eld will not fi nd the " set of algorithms that allows us to proceed, systematically, from the personcentered planning process to … real-world contexts that best promote QoL [quality of life] " (Carr, 2007, p. 5). The fi eld of intellectual disability will have to rely on more diverse types of evidence, and acknowledge the value of case reports, and the evaluation and systemic sharing of day-to-day practice. ...
Article
Background Social inclusion is central to disability policies internationally. The high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour. Method A systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been researched and operationalised in the empirical literature, and aimed to determine what evidence exists about the extent of social inclusion by people with intellectual disability and challenging behaviour. Results A thematic analysis of the 14 papers identified that social inclusion has been poorly defined and measured, and that the little research that has occurred in respect of people with challenging behaviour has demonstrated their potential to be socially included. Conclusions Clearer conceptualisation of inclusion, and greater understanding of practices that support social inclusion and system level mechanisms, which ensure goals around inclusion gain prominence in funding and support plans, may address the neglect of this critical quality-of-life domain for people with challenging behaviour.
... Researchers have tried to identify the impact of friendship in the lives of these young people. Adolescents with ID, like other adolescents, want to be included in the lives of others; they want friends and companions (Reinders, 2002). Adolescents with ID need friends as students, neighbors, colleagues, or teammates (Reinders, 2002) to provide them with companionship, support, and a sense of emotional well-being (Castles, 1996). ...
... Adolescents with ID, like other adolescents, want to be included in the lives of others; they want friends and companions (Reinders, 2002). Adolescents with ID need friends as students, neighbors, colleagues, or teammates (Reinders, 2002) to provide them with companionship, support, and a sense of emotional well-being (Castles, 1996). ...
Article
Abstract This qualitative study with a phenomenological approach explored the friendship experiences of adolescents with intellectual disabilities from their own perspective. Five adolescents with intellectual disabilities from Community,Living Toronto were
... Navigating the fragmented adult service system in the U.S. is challenging, and many adults with ID lack employment or meaningful social and recreational opportunities. As such, compared to others, adults with ID have fewer friendships and smaller social networks that are often limited to family members or paid care providers (13)(14)(15)(16). Asselt-Goverts and colleagues (17), however, reported that the majority (73%) of their participants with ID were satisfied with the size of their social networks. ...
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Introduction People with neurodevelopmental disabilities, including Prader-Willi syndrome (PWS), are at heightened risk for the negative sequalae of loneliness, including depression and anxiety. While societal factors such as stigma or limited social opportunities contribute to loneliness, so too do deficits in social cognition and social skills. People with PWS have specific difficulties recognizing affect in others, accurately interpreting social interactions, and taking the perspectives of others. These features, combined with hyperphagia, rigidity, and insistence on sameness conspire to impede the abilities of people with PWS to make and sustain friendships and reduce feelings of loneliness. Methods We developed and administered an intervention, Building Our Social Skills (BOSS), that aimed to improve social skill deficits in PWS. The 10-week intervention was administered on-line via Zoom to 51 young people with PWS in the U.S. (M age = 20.8, SD = 6.42). Two clinicians co-led groups of 6–8 participants in 30-min sessions, 3 times per week, and also trained 4 graduate students to co-lead groups with high fidelity. We used a pre-post intervention and 3-month follow-up design, with no control group, and mitigated this design limitation by triangulating across informants and methodologies. Specifically, parents completed the widely used Social Responsiveness Scale (SRS) and Child Behavior Checklist (CBCL), and participants were individually interviewed about their friendships and loneliness. Interview responses were reliably coded by independent raters. Results Repeated measure multivariate analyses, with baseline values entered as covariates, revealed significant pre-to post-test improvements in the SRS's social cognition, motivation and communication subscales ( p 's < 0.001), with large effect sizes ( n p 2 = 0.920, 0.270, and 0.204, respectively). Participant and parental reports of loneliness were correlated with the CBCL's Internalizing domain, specifically the Anxiety/Depressed subdomain. Over time, parents reported getting along better with peers, increased contact with friends, more friends and less loneliness. Participants also reported significantly less loneliness and more friends. Conclusions This mixed method, proof-of-concept study demonstrated the feasibility of delivering an on-line social skills intervention to young people with PWS. As no differences were found between clinician vs. graduate student outcomes, the BOSS curriculum holds considerable promise for wider dissemination and implementation in the PWS community.
... Henceforth, they would be able to engage in projects of self-realisation, with the benevolent support of trained care workers. While several philosophers have questioned the dominance of the ideal of "independence" in the care for people with intellectual disabilities at the expense of concepts such as dependency and relationality (Meininger 2001;Reinders 2002;Kittay 2011Kittay , 2019, some variation of this narrative often informs contemporary policy and practice (Meininger 2010). It also provides assumptions to a substantial amount of research in the social sciences (Altermark 2017). ...
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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.
... Their practices are influenced by the policy and organizational contexts in which they are embedded. In the Netherlands, true to the trend described above, this has meant a striving towards self-determination and self-reliance (Fenger & Broekema, 2019;Reinders, 2002). If care theorists and managers alike frame dependency as a problem of selfdetermination, what does that mean for care in practice? ...
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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.
... We need to be engaged in philosophical and ethical discussion relating to communication with people with profound intellectual and multiple disabilities. We can read the philosophers who have added to our understanding of this group, such as Reinders (2002;, Kittay (2010) and Vorhaus (2015). We can also go through our own processes of philosophical and ethical examination of issues relating to our engagement with people with profound intellectual and multiple disabilities in a model similar to that used by Antaki and colleagues (Antaki et al. 2017;Finlay et al. 2008a;Finlay et al. 2008b) and considering the relationship between policies and practices (Bigby et al. 2009;Bigby et al. 2015). ...
... This means that supported decision-making schemes must incorporate not only capacity building strategies for supporters but mechanisms that proactively reach out to find, encourage and nurture supporters for the many people who do not have strong existing support networks. Formal rights can only create space for action, and as Reinders argues, people with cognitive disabilities need to be included in informal relationships as well institutions (Reinders, 2002). ...
Chapter
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This chapter analyses the practice of support for decision making with adults with intellectual disability or acquired brain injury, whom we refer to as people with cognitive disabilities. It reviews propositions about the advantages of the concept of supported decision making and proposals to reform legislative schemes governing decision making for people with cognitive disabilities. In doing so, it highlights the role of values in driving change and the relative absence of evidence about practice. Drawing on a program of empirical Australian research, factors associated with effective decision support for people with cognitive disabilities and challenges faced by supporters are reviewed. Finally, we describe the La Trobe Support for Decision Making Practice Framework which can be applied flexibly across diverse contemporary legal contexts and is the first evidence-based guide to support for decision making.
... However, a supportive social network is endorsed as vital for all profiles (apart from Profile 2). According to Reinders [41], a positive and supportive social network (e.g. friends) can be seen as a main influencing factor that enhances the quality of life. ...
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Background: The demand for support for persons with mild intellectual disability or borderline intellectual functioning is growing rapidly. These persons often encounter individual and familial limitations that influence their human functioning, and often have difficulty coping with the demands of modern society. Although in the areas of policy, research and practice, people with mild intellectual disability or borderline intellectual functioning are generally approached as one group, important differences between them have been reported. Current support seems to be both suboptimal and insufficiently differentiated. Methods: In this Delphi study we aimed to explore the need for appropriate and differentiated support for individuals with mild intellectual disability or borderline intellectual functioning. The study was based on five unique profiles of persons with mild intellectual disability or borderline intellectual functioning that are associated with individual and environmental variables. The opinions of expert primary caregivers, professional caregivers and scientists were analysed for potentially appropriate types of support for each of the five profiles. Results: A total of 174 statements, divided over the five profiles, were presented to the participants. For 74 statements, consensus was reached between the expert groups. For each profile, these consensual statements represented specific items (e.g. concrete personal goals) and non-specific items (e.g. the attitude towards persons with mild intellectual disability or borderline intellectual functioning, and the coordination of health care) related to the support needs. Conclusion: This Delphi-based study generated consensual opinions contributing to a more differentiated system of support for individuals with mild intellectual disability or borderline intellectual functioning. Although these findings need additional investigation, they address actions that might enhance the support programmes for these individuals into more personalized support.
... Connectedness, emotional security and intimacy are considered to be among the most vital aspects of quality of life of individuals with severe disability (Bradshaw, 2001;Caldwell, 2006Caldwell, , 2007Cascella, 2005;Forster, 2011;Griffiths, 2010Griffiths, , 2013Marquis & Jackson, 2000;Petry, Maes & Vlaskamp, 2007;Reinders, 2002). However, limited verbal communication highly challenges the process of mutual exchange. ...
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From the perspective of music and wellbeing in people with severe disabilities, this is a valuable and interesting textbook. The author L. Tiszai has integrated well-established traditional approaches to infant research and innate human musicality with new work in the expanding fields of music and wellbeing and embodied music interaction. The book is intended for learners who may have little or no experience reading professional international journals, but would benefit from a substantial research base in understanding how these emerging areas can contribute to working with nonverbal children and adults with severe disabilities. The book is organized into eight chapters. The first half of the book focuses on the theoretical background; the second half is dedicated to practice. The subject matter is accurate and has an appropriate reading level for the students who will be using the material. The book has been written in a style that will hold the student’s attention; the end-of-chapter questions will be interesting for the learners. To conclude her textbook on musical interventions for nonverbal children and adults with severe disabilities, L. Tiszai pleads for a fair and unbiased treatment of various groups in society. In doing so she motivates learners to acknowledge the importance of inclusive communities, where the needs and talents of the most vulnerable members of society are taken in consideration.
... Since the beginning of humankind, people have always strived to improve their living conditions so as to lead the most satisfactory life possible (Glatzer, 2015). In fact, one constant throughout history, from ancient Greece to the present day, is the interest in the reasons and situations which lead people to having a quality life; in other words, the search for what is known as the "good life" (Reinders, 2002). ...
Chapter
It is essential to consider the study of emotions in institutionalized elderly people and how they affect their adaptation and quality of life. The objective was to analyze the relationship between adaptation, quality and enjoyment of life and emotional intelligence in institutionalized elderly people. Participants were 27 elderly people (15 men) from an institutionalized center of the Region of Murcia, aged between 67 and 92 years. The instruments used were: The Brief Inventory of Emotional Intelligence for Senior Citizens (EQ-I-M20); The Beliefs about Enjoying Life Questionnaire; And the Quality of Life Assessment Questionnaire in Residential Context (CECAVIR). The results showed the existence of relationships between the fact of the moment and the emotional intelligence as well as the quality of life. The study determines the need to evaluate and promote Emotional Intelligence in the early elderly because of the relevant role in the enjoyment of life and quality of life.
... Since the beginning of humankind, people have always strived to improve their living conditions so as to lead the most satisfactory life possible (Glatzer, 2015). In fact, one constant throughout history, from ancient Greece to the present day, is the interest in the reasons and situations which lead people to having a quality life; in other words, the search for what is known as the "good life" (Reinders, 2002). ...
Chapter
This chapter analyses the relationship between emotional intelligence (EI) and quality of life variables in older adults. EI refers to the ability to perceive, assimilate, understand and regulate one’s own emotions and the capacity to detect and interpret other people’s emotions (Mayer & Salovey, 1997), whereas quality of life is a complex and multidimensional construct that includes both objective and subjective aspects (e.g., social, health, environmental, etc.) of an individual’s life conditions. In order to address this relationship, the chapter is organised into four sections. The first one offers a brief conceptualisation of closely related terms, such as quality of life, health-related quality of life (HRQoL), well-being and healthy behaviours. The concept of older adult is introduced in the second section and the special characteristics of their emotional functioning, as reported in the scientific literature, are analysed. The third section provides a review of studies that have addressed the EI-quality of life variables relationship in older adults. Finally, there is a detailed presentation of the results derived from our line of research, which consider the characteristics of a specific group of older adults – those who are institutionalised in residences. A conclusion is also drawn in the fourth section on the role of EI on quality of life and well-being in these older adults.
... 9) since it could contribute to robust and mature emotional interactions with colleagues. Further, Reinders (2002) argued that people with intellectual disabilities need friends and building meaningful and varied social networks is "to build a moral culture in which [people with intellectual disabilities] can flourish" (p. 4). ...
Article
The Australian National Disability Insurance Scheme's (NDIS) market-based paradigm, which prioritises “person-centred planning” and “self-directed care”, supports independence and the social and economic participation of participants. This article examines the NDIS's philosophical congruence and whether it affirms the dignity of people with an intellectual disability and enhances their quality of life. A philosophical methodological approach considers the NDIS paradigm from John Macmurray's personalism, which posits persons as people who act and are individual, interactive, interdependent, relational, social beings, who respond to their lived experiences. To indicate the relevance of Macmurray's personalism, this article examines data on the practice of disability services to suggest another side to the paradigm that underscores the NDIS. The focus of the NDIS on “markets” and “business” could tear a seam in a paradigm designed for people to realise their personal nature, interdependency, and affirm their personal dignity. A Macmurrian human nature is richer than person-centred planning, since this analysis reinforces the importance of personal relationships in people's lives to the application of the NDIS. A failure to give priority to this dimension may invalidate personal flourishing, friendships, living a meaningful life, and having a valued role in society.
... However, when considering the challenges people with complex needs experience in this area, enhanced provision of supports in this area would appear to have great merit. Nonetheless, additional attention to sup- ÓAAIDD 2016, Vol. 4, No. 3, 137-155 DOI: 10.1352/2326 (Table 3 continued) INCLUSION ÓAAIDD 2016, Vol. 4, No. 3, 137-155 DOI: 10.1352/2326 Recommendations based on Ife's; and they added: ''People must trust and respect others and feel safe to speak their mind in public without fear of retribution'' and team dynamics Reinders (2002) N ''The issue at stake here has to do with how we understand the concept of inclusion.'' Rights create space for action and opportunities for individuals to take on new institutional roles. ...
Article
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This article summarizes the results of a literature review conducted as part of the National Beyond Tokenism Research Study. People with intellectual and developmental disabilities have begun to be included on boards and policymaking organizations, but the roles given to them have often been tokens—symbolic gestures that result in presence without genuine inclusion. To better understand the advances that have been made and the barriers that people with developmental disabilities still encounter, a comprehensive review of the literature on how people with complex and high support needs are engaged in leadership development, public policy advocacy, and community activities was conducted. The analysis identified key gaps in information about the degree of influence in leadership and organizational decision making exercised by people with complex needs. These results reflected the need for additional research to better understand how far people with developmental disabilities have moved “beyond tokenism” and into authentic leadership roles, which informed other activities conducted as part of the National Beyond Tokenism Research Study.
... Human rights movements in Australia, the UK and the US have achieved citizenship rights for people with disabilities, creating social space for them to occupy formal roles such as worker or consumer. But rights alone will not achieve inclusion or human fulfillment for people with intellectual disabilities (Reinders, 2001(Reinders, , 2002. For this to occur he considers they must be included in the informal social sphere, one of civic friendship'. ...
Book
The first interdisciplinary book taking a contextual approach to the developing health needs of women with intellectual disabilities. It considers the social, economic and political contexts of health promotion. Its concise but comprehensive evidence base makes it a unique, reliable source for a wide readership.
... The acceptance of their personhood is surely a criterion for accepting them into our lives. Reinders (53) noted that the real challenge people with intellectual disabilities pose for us is: "… not so much about what we can do for them, but whether or not we want to be with them…it is not citizenship, but friendship that matters" (p. 5). ...
Chapter
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This chapter discusses various barriers people with intellectual and developmental disabilities are facing in achieving social inclusion and a good quality of life. It picks up several themes presented by Brown and Faragher in their chapter and elaborated upon by other contributors. It is proposed that a key aspect for a person to perceive their having a good life quality is their self-identity or self-image. It is argued that there is a critical link between the concepts of quality of life and genuine community inclusion for people with intellectual disability. Inclusion and quality of life are examined within the context of philosophical, economic and political forces. The building of social capital, community capacity and the development of interdependence as an antidote to rampant individualism will be explored. The development of an ethical community could provide a framework in which to meet the broader societal challenges that not only face disadvantaged groups, but the community generally.
... It is this repositioning that is missing from the discourse on citizenship. "Rights talk" (Reinders, 2002), therefore, does not yet position people with intellectual disabilities as equal citizens. ...
... Friendship in persons with PIMD has been studied by use of qualitative methods, however, it is not yet clear how friendship is talked about and how it compares with other kinds of relationships of persons with PIMD (Hughes, 2010). However, speaking of inclusion these friendships and the participation in other people's lives are emphasised instead of citizenship (Reinders, 2002;Reinders, 2008). ...
Article
Social interactions may positively influence developmental and quality of life outcomes. Research in persons with profound intellectual and multiple disabilities (PIMD) mostly investigated interactions with caregivers. This literature review focuses on peer interactions of persons with PIMD. A computerized literature search of three databases was conducted. Based on specific inclusion criteria eight articles were selected. In these studies, social peer interaction was not clearly operationalized. More interactions with typically developing peers were observed compared to interactions with peers with PIMD. Both groups of peers can be trained to interact or to use technological support systems during peer interactions. After training, interactions with peers increased and interactions with professionals during peer interactions decreased. Interactions with normally developing peers positively influenced specific behaviours of persons with PIMD. Not much research is available on peer interactions of persons with PIMD, especially peer interactions between persons with PIMD remain unclear.
... This may be compounded by the use of images of people with less severe forms of disability in public representations of disability policy (Burton & Kagan, 2006). Reinders (2002) suggested that progress toward greater social participation of people with intellectual disability requires change to the social processes that continue to disadvantage them. Relatively little research, however, has looked beyond the attitudes and skills of direct support staff. ...
Article
Background The social processes that operate in community groups need to be better understood if people with intellectual disability are to be included in such groups. This study aimed to identify the nature and impact of the group processes on the active participation of people with intellectual disability.Method Extensive field notes were taken during 2 years of participant observation whereby 5 people with a moderate level of impairment were supported to participate as individuals in community groups for periods of 5 to 10 months. Analysis used a critical realist approach.Results Active participation was influenced by the interaction of 5 key social processes: leadership response, characteristics of the participants with intellectual disability, access to expertise, the presence of an integrating activity, and dealing with the difference dilemma.Conclusions By revealing these processes, the study identified a number of interventions and ways of approaching community groups that have the potential to increase the extent to which people with moderate levels of impairment become active participants.
... For instance in LDCs, people are mostly known by their families and social relationships with the others. Individuals with disability are more likely neglected and excluded from society in LDCs, where the perception of disability is that it is simply a deficit or a problem (Frey & Temple, 2008;Fujiura, Park, & Rutkowski-Kmitta, 2005;Reinders, 2002). Consequently, in LDCs, they are rarely offered academic or occupational opportunities. ...
Article
Individuals with intellectual disability (ID) are more likely to experience numerous poor health and social outcomes. Interestingly, in the last few decades, efforts to enhance condition of people with disability were focused on the social model of disability rather than the medical model of disability. However, the case was different for less developed countries (LDCs). Cultural differences could undermine efforts to promote social inclusion of people with ID in less developed societies. The authors consider the conceptualization of ID from the perspective of developed and LDCs and consider how marginalization can be lessened by approaching ID as a human rights issue. They note that the social life and political participation of people with ID are now becoming more characteristic of modern social policies around the world. While the current social model of disability originally evolved in developed countries, the authors contend that LDCs should make some adaptation according to their cultural features before putting them into practice. They present a path toward inclusive policy in LDCs and posit that greater social and political participation will change the acceptance and social condition of people with ID.
... It takes the supports provided by local developmental service agencies for young adults with intellectual disabilities to be socially included (as measured by satisfaction with community belonging) in rural and small town Ontario. However, it also requires, as Reinders (2002) noted, attention to the politics of culture. Our towns need to be infused with the value of community. ...
... De verzorgingsstaat blijft in de vorm van collectieve regelingen voor ondersteuning van participatie voor deze mensen bestaan wanneer de mogelijkheden van het eigen sociale netwerk overschreden worden (Putters, 2014; van Regenmortel & Embregts, 2012). Niet al- (Kröber, Verdonschot, & Schuurman, 2013;Reinders, 2002). ...
Article
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In dit essay gaan de auteurs na op welke manier de politiek-filosofische stroming 'capability benadering' dienstbaar kan zijn aan het ondersteunen van maatschappelijke participatie van mensen met verstandelijke beperkingen. De mogelijkheden worden verkend door ze toe te passen op een participatie-model van Virginie Cobigo et al. Het artikel is relevant voor professionals om kennis te maken met denkkaders die bij het verstaan en bevorderen van participatie nuttig kunnen zijn.
... Individuals with an intellectual disability often have poor dietary habits (Adolfsson et al., 2008;Draheim, 2006), low physical activity levels (Emerson, 2005, McKeon et al., 2013 and weight disturbances (Bhaumik et al., 2008;Hove, 2004). As such, this group carry a greater chronic disease burden than that of the general population (Moran et al., 2005;Reinders, 2002). ...
Article
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Adults with an intellectual disability have poorer diets than the general adult population. The Able 2 Cook 4 Health cookery course aims to improve the diets of adults with mild to moderate intellectual disability. This study aims to evaluate the course by obtaining the views of course participants and the views of managers hosting the course. Thirty course participants took part in focus groups. Five managers hosting the course participated in a semi-structured interview. Positive features of the course included the group cooking, social interaction and course instructors. Collaboration between centres hosting the course and participants' home environment is needed to help transfer the skills learned to all home settings. The Able 2 Cook 4 Health cookery course provided participants with an important social outlet to learn essential occupational skills. These findings could particularly influence the diets of adults with an intellectual disability moving into independent living.
... Among people with disability, those with intellectual disability are particularly marginalized. Many people with intellectual disability are unable to advocate for their own health-related needs (Reinders 2002;McConkey and Alant 2005;Emerson 2007) and internationally a deficit of services exist to assist them (ACFID 2003;Oullette-Kuntz 2005). Although disability has traditionally been a neglected development issue (Officer and Groce 2009), the United Nations' Convention on the Rights of Persons with Disabilities (CRPD) has focused 'much greater attention to disability within the UN system, especially at the level of implementing agencies' (Kett andOmmeren 2009, 1802). ...
Article
This qualitative study investigated the use of folk medicine by families for people with intellectual disability in the Philippines. Workers from Negros Occidental who support people with intellectual disability participated in semi-structured interviews. Findings show families seek the intervention of a folk healer before seeking primary healthcare support and a prosperous cultural use of folk medicine exists across the Philippines. Intellectual impairment is perceived by some Filipinos to be caused by supernatural forces. Socio-cultural constructs of intellectual disability probably influence health outcomes for this populace. If primary healthcare tools and resources for people with intellectual disability that are developed in higher-income nations are to have the potential to be transferred into other settings, understanding of attitudes towards alternative medicine is needed.
... In this way, all network members worked to actively increase bonding social capital (Putnam 2000) by creating strong loyalties within the group. Simply by strengthening the relationships within a personal support network, people are likely to encounter more opportunities for inclusion, participation and the protection of their rights (Reinders 2002). ...
Article
This paper describes the dynamics of support observed in the networks of nine adults with intellectual disability, developed by families who had committed to achieving a ‘good life’ for this person. Network members, including the person with a disability, participated in this longitudinal ethnographic study. Three principles that underpinned their work were positive and respectful relationships, mentorship and providing opportunities and expectations. Participants worked actively with other network members to develop higher levels of autonomy and social participation.
... The acceptance of their personhood is surely a criterion for accepting them into our lives. Reinders (53) noted that the real challenge people with intellectual disabilities pose for us is: "… not so much about what we can do for them, but whether or not we want to be with them…it is not citizenship, but friendship that matters" (p. 5). ...
Article
Despite recognition of the importance of integrated community living and support, there is evidence that parents remain the primary caregivers of young adults with intellectual disability (ID). In addition, employment rates remain low in this population. This study aimed to investigate the changes in living arrangements and participation in daytime activities over time in a community population of young people with ID. The sample consisted of 536 participants aged 4.0-18.9 years at Wave 1, followed up at Wave 5 when aged 20.5-37.6 years. Information was collected on their living arrangements and daytime activities at both time points, along with living skills and information on community social inclusion at Wave 5. For parents still caring for their adult child with ID, information was also collected on parental ratings of their own mental and physical health, and their satisfaction with the long-term care arrangements for their adult child. A significant proportion of young people were still living with their parents at Wave 5. A greater proportion of those with a severe-profound degree of ID were living in residential care. Parents caring for their adult child reported high levels of mental health problems and dissatisfaction with the long-term care arrangements for their child. A small proportion of young people were in paid employment, and the majority was engaged in structured activities provided for those with an ID. Over one-third of the sample participated in a structured daytime activity for 10 or fewer hours per week, and 7% were not engaged in any structured daytime activity. These results suggest that adequate provision of accommodation and employment services for young adults with an ID is lacking. In many cases the responsibility of care continues to reside with parents as their children transition from childhood to adulthood. Greater attention is needed to address these issues and facilitate social inclusion and integration for young people with ID.
... This finding resonates with the discussion in the literature about the nature of relationships for people with ID, the quality of professional support and inclusion in society (Reinders 2002;Reinders 2008a,b). While our data reflected these difficulties, they may persist as long as transition review meeting participants fail to agree on particular tasks for support staff (Fig. 3). ...
Article
Person-centred planning has played a key role in the transformation of intellectual disabilities services for more than a decade. The literature has identified clear advantages for service users when service delivery is planned around the individual rather than the user is made to fit into service structures. Researchers however have pointed out that there is a lack of evidence that person-centred planning positively influences outcomes for users. Our study examined the application of person-centred planning during transition for young people with intellectual disabilities. We investigated the nature and content of 44 person-centred reviews of transition planning for this population in a local authority in the UK. We carried out a documentary analysis of all person-centred plans and conducted telephone interviews with all families participating in the programme. We focused on the issue of attendance at review meetings and what was discussed during the meetings. Analysis of the data shows an increase in the participation of young people and carers at review meetings and a significant shift in topics discussed during the transition planning process compared with previous programmes. However, some of these effects may dissipate once young people are actually leaving school as planning well is not synonymous with having an improved range of placement options. The findings suggest that person-centred planning can impact positively on some aspects of transition planning, while it may be too optimistic to expect radical improvement in other area. Key to further improvements is to complement person-centred planning with consistent involvement of all relevant stakeholders in planning for individuals.
Article
Human rights and clinical psychology need each other. Clinical psychology’s core values are highly congruent with the human rights based approach (HRBA) recently adopted by the Care Quality Commission. Conversely, psychologists understand organisational challenges, can operationalise practical delivery of a HRBA and can develop much needed evaluation strategies for values-based practice.
Article
There is a gap between the desired outcomes of social inclusion policy and the everyday experiences of people labelled with intellectual and developmental disabilities. Despite belonging rhetorically named in social inclusion policy and practice, belonging is often absent in the lives of people labelled with intellectual and developmental disabilities and remains undertheorised in its relationship to social inclusion. In this paper, we explore the role belonging might play in narrowing the gap between how social inclusion is theorised and how it is experienced. Drawing on critical disability and feminist relational theories, we outline a relational conceptualisation of belonging and use it to ‘crip’ the construct of social inclusion. Exploring the synergies and tensions that surface when social inclusion and belonging are held together as discrete but interconnected constructs, we name four conceptual shifts and expansions that allow us to see social inclusion differently. Through the centring of the experiences of people labelled with intellectual and developmental disabilities, we explore the ways belonging can help to reimagine inclusion from assimilationist, static, objective and formal towards inclusion as fluid, negotiated, (inter)subjective, (in)formal and intimate.
Article
Background: This study is inclusive research. Inclusive research is when people with disability are involved as researchers. The aim of this project was to focus on relationships that people with intellectual disability have and to find what makes these relationships work. Another aim of this project was to share stories about these relationships at a big event. Methods: People with intellectual disability that were interested in participating were asked to pick a person whose relationship was important to them. Overall, seven pairs took part in the project. We interviewed the pairs together and asked them:. How did the relationship start? What makes the relationship strong? Why is the relationship important to each person?. Later, participants were invited to turn their interview responses into a relationship story that was displayed as part of the 20th anniversary celebrations for the Centre for Disability Studies (CDS). Findings: We looked through the transcripts to find out how the relationships work. We found four major themes—relationships change over time, important parts of the relationship, relationship challenges, and what makes the relationship work. Conclusions: There were many successes in this project. It was the first time that Jack and Seren had done inclusive research together and we learnt a lot about how to work well together. The banners shown at CDS's 20th anniversary event celebrated relationships and showed members of the public a range of relationships involving people with intellectual disability.
Chapter
Die Frage nach dem guten Leben besitzt fundamentalen Charakter für das Projekt der Philosophie (vgl. Wolf 1999), insofern Letztere nach einem rationalen Welt- und Selbstverständnis sucht, das eine Orientierung im eigenen Dasein ermöglicht. Diese ›praktische Grundfrage‹ (Ernst Tugendhat) ist existentiell »in der Verfassung des menschlichen Lebens enthalten« (Wolf 2013, 12), stellt sich allerdings mehrdeutiger und vielschichtiger dar, als sie auf den ersten Anschein wirken mag (Steinfath 1998, 13–17; Wolf 1999, Kap. 3): Sie betrifft – im Gegensatz zur eminent praxisbezogenen Frage: »Was soll ich tun?« – nämlich nicht die Entscheidungsfindung in einzelnen Situationen, sondern das Leben als Ganzes in seiner Komplexität; das Ziel, ein gutes Leben zu führen, kann demnach auch nicht als singulärer Handlungszweck wirksam werden.
Chapter
The model presented in Chap. 1, Critique—Praxis—Emancipation, will now be used to explore the dominant philosophical values that stand behind the economic and social paradigms that influence and control the lives of persons living with an intellectual disability in western nations. For our purposes here, praxis will present the features of the dominant economic discourse used to administer, fund and regulate service provision to persons living with an intellectual disability. The social sciences rely and, indeed, use each other’s knowledge to develop theses or to substantiate their own arguments. For instance, the neoliberal theories in economics take learnings from psychology about the motives of human behaviour and then aggregate these motives into a model of how persons will behave in a market economy. There is, then, an incline within the social sciences; they are interconnected through economic and social values. Western nations accept These philosophical assumptions and try to integrate them with social justice initiatives such as the Convention of the Rights of Persons with Disabilities (CRPD). Therefore, the philosophical values inherent in neoliberalism and the CRPD have currency with those found in western nations. Praxis will also include a discussion on the often-overlooked role the characteristics of an institution play in the personal lives of persons living with an intellectual disability. The Australian National Disability Insurance Scheme (NDIS) will be used as a critique to assess how neoliberalism’s philosophical values serve persons living with an intellectual disability in a western nation state.
Article
Human rights and clinical psychology need each other. Clinical psychology's core values are highly congruent with the human rights based approach (HRBA) recently adopted by the Care Quality Commission. Conversely, psychologists understand organisational challenges, can operationalise practical delivery of an HRBA and can develop much needed evaluation strategies for values-based practice.
Article
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Background: Dissatisfaction with the inflexibility of the group home model has led to the growth of supported living which separates housing from support and is thought to have greater potential for better quality of life outcomes. Comparative studies have had mixed findings with some showing few differences, other than greater choice in supported living. By investigating service user experiences of supported living this study aimed to identify how the potential of support living might be better realised. Method: Thirty–four people with intellectual disability participated in 7 focus group interviews and six 6 people in an individual interview. Date were analysed using grounded theory methods. Results: Though participants experienced greater choice and control over their everyday lives they did not feel they controlled the way support was provided and experienced restrictions on lifestyle associated with low income. Despite their use of community places and varied social connections to family, friends and acquaintances most experienced loneliness. Conclusions: If the potential of supported living is to be realised shortcomings of support arrangements must be addressed, by for example, greater consistency of support worker skills, consumer control over recruitment and rostering, and more skilled support to build friendships and manage difficult relationships.
Article
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1 Inleiding De kwaliteit van leven van mensen met een verstandelijke beperking wordt grotendeels bepaald door de mate waarin hun omgeving zich in hen weet te verplaatsen en een bete-kenisvolle relatie met hen aangaat (zie o.a. Reinders, 2002; Schuurman & van der Zwan, 2009). De kwaliteit van zorg en leven kan dan ook in principe worden verbeterd door de relaties te versterken met mensen die in hun leven belangrijk zijn, zoals familieleden, vrienden, zorgverleners en gewone burgers. Dit idee bracht in 2014 vijf organisaties in de gehandicaptensector samen in het project Handicap Experience geïnspireerd door het voorbeeld van de Alzheimer Experience 1 , een interactieve film met als doel meer begrip te kweken voor de belevingswereld van mensen met dementie. De organisaties wilden met een frisse blik kijken naar de cliënt en zijn omge-ving, en een leeromgeving ontwikkelen die bij-draagt aan het versterken van de relatie tussen mensen met een beperking en hun omgeving. Niet de ontwikkeling of (gedrags)verandering van de cliënt is daarbij het uitgangspunt, maar een andere houding van de personen die bij de zorg en het leven van mensen met een beper-king betrokken zijn (The et. al., 2015). In de eerste fase van dit project werd bij de vijf deelnemende zorgorganisaties onderzoek ge-daan. In iedere organisatie verrichtte een on-derzoeker participerende observatie met het doel meer te weten te komen over de relaties tussen de cliënt en de mensen in zijn directe omgeving (huisgenoten, collega's, verwanten, professionals en samenleving). Dit artikel be-schrijft een deel van het onderzoek, namelijk het verloop en de resultaten van het onderzoek naar de relatie tussen mensen met een beper-king en professionals. De volgende vraag staat in dit artikel centraal: Wat zijn de kenmerken van de relatie tussen de persoon met een ver-standelijke beperking en de professionals? 1 Zie www.alzheimerexperience.nl (gelanceerd in 2011 door A.M. The & M. Ouwehand) Beleid & Management Aan de hand van etnografische observaties en gesprekken proberen vijf zorgorganisaties de kenmerken van relaties tussen personen met een verstandelijke beperking en (hun) bege-leidende professionals te beschrijven. Het on-derzoek leidde tot het formuleren van vijf 'ba-lansen' waarmee deze relaties kunnen worden begrepen. De auteurs betogen dat de verant-woordelijkheid voor veranderingen niet alleen ligt bij individuele professionals maar bij de hele organisatie en bij de sector. Het artikel is vooral van belang voor bestuur-ders en professionals in de zorg. WB
Chapter
People with intellectual disability are one of the new non-traditional groups who are beginning to form part of the ageing population (see Chapter 3). It is only in the last 40 years that significant numbers with intellectual disability have survived into adulthood and later life. For example, the average life span of people with Downs Syndrome has increased from 30–35 years to 55–60 years since the 1960s (Torr et al., 2010). As well as the new experiences of ageing, their increased life expectancy has led to hitherto unexplored phenomena such as ‘ageing carers’, interdependent households comprising aged parents with middle-aged sons and daughters with intellectual disability, and new types of relationships such as older siblings with and without an intellectual disability. Such developments should be a cause for celebration, which exercises our imagination to find ways to maximise quality of life as people age, and to uncover the expectations and experiences about this new part of the lifecourse. Too often however, they are cast in a negative light, with attention turned to the problems caused for already overstretched service systems.
Article
The effect of care in the community and integration into mainstream health services for people with intellectual impairment (including learning disabilities and other neurological disorders such as acquired brain injury that result in diminished cognition) has proved variable. The Department of Health's policy Valuing People: A New Strategy for Learning Disability for the 21st Century (2001) advocates continued ‘inclusion’ into mainstream services for this client group. While the development of specialist services under the Learning Disability Development Fund is planned for clients who present with complex issues such as severe behavioural problems, there are concerns that such provision is inadequate. The aim of this paper is to highlight some of the challenges associated with the drive to inclusion for many people with intellectual impairment, and the factors that limit their integration with the non-intellectually impaired community. A consideration of the conceptual foundations of the policy of inclusion will help shed light on these challenges and on ways to address them. It is important that nurses working in all fields of neuroscience are aware of some of the pitfalls and problems associated with the policy of inclusion so that they can support their patients and advise colleagues working in mainstream services on caring for this group. It is argued that the benefits of inclusion and the initiatives that have resulted from its development have not been proved and cannot be assumed.
Article
Background: Social inclusion is a widely acknowledged goal; who is best positioned to provide support and how support is delivered are key questions. Using Active Mentoring training, members of community groups mentored a person with intellectual disability and supported their inclusion in that group. Methods: Interviews with 14 mentors explored their experiences of supporting a previously unknown person with intellectual disability to participate in their community group. Findings: The core theme was No Different From Us. Mentors saw beyond the disability, they valued others, were community leaders, and had intrinsic qualities. With some basic orientation to the task, mentors were able to support the inclusion of their mentee in the group. Conclusion: Community members are willing to support people with intellectual disability to join their community groups. The Active Mentoring training is one way of harnessing the goodwill of community groups and their members to include people with intellectual disability to participate on an individual basis in community groups.
Article
This study reports the friendship experiences and aspirations of adults with intellectual disabilities. The findings of a larger study were reviewed by an expert group of self‐advocates with intellectual disability. The expert group confirmed some of the interpretation of the original data and expanded on issues. Friendship is established as an issue of concern among adults with intellectual disability. Consequently, policy‐makers and service providers need to be intentional about providing support for friendships. Participants asserted a positive self‐identity of being a person with intellectual disability and how this could be a basis for friendship. Also, people with intellectual disability demonstrated how they should be considered experts in their own life experience and how they can be effectively included in the formulation, implementation, analysis and review of research.†In memory of our dear friend Allison J. Dewing‐Moore, died 3 November 2005.
Article
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A telephone survey was conducted to determine attitudes towards individuals with intellectual disabilities. This article explores the perceptions of the public regarding the best living arrangements for adults with intellectual disabilities. A majority of the 680 respondents believed that some form of community living would work best, either in a supervised apartment or in a group home. Less than 20% of respondents felt a group home would negatively impact their neighbourhood. Respondents also indicated that they believed that a lack of community services was a major obstacle to inclusion within communities of people with intellectual disabilities.
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