Exploring the specific needs of an understudied group: Children with intellectual disability in residential child care

Children and adolescents who live in out of home care in the child protection system are considered to be vulnerable to manifesting mental health disorders as well as other types of difficulties. This risk is greater in the case of children who display any type of disability. The aim of this study is to profile the state of health and well-being of a group of children presenting intellectual disability who live in residential care in a Spanish autonomous community and to compare these results with their non-disabled peers.     

The construction of intellectual disability by parents and teachers

This study examines how disability is constructed by significant adults in the lives of young people with intellectual disability. Specifically, we are examined how parents of those affected by intellectual disability and teachers in special schools construct intellectual disability in talk. Using focus group interviews, we examined whether stigma might be recreated or sustained within the family and school settings of those affected by intellectual disability. Parents and school staff constructed disability as negative, articulating difference from ‘the norm’, which was claimed to drive social isolation for affected young people. There was also evidence that parents and teachers attributed less agency to young people affected by intellectual disability. Discussion orients to how parents and teachers, see themselves as advocates for those with intellectual disability highlight, whilst at the same time recreating pervasive and subtle distinctions between children with and without intellectual disability.     

Persons with profound intellectual disability and their right to sex

This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.     

Everyday life of persons with intellectual disability living in residential settings: a systematic review of qualitative studies

This article presents a systematic review of studies published between November 2010 and November 2014 about the everyday life of adults with intellectual disability as viewed from their own perspective. Everyday life refers to an interdisciplinary concept including approaches attentive to the mundane and to ordinary routines of social relations and practices. Twelve studies met the inclusion criteria. The review was carried out as an interpretive synthesis. Findings from the included studies revealed neglect of participation regarding the wishes, self-determination, choice and control of persons with intellectual disability in their everyday lives. This neglect demonstrates the limitations persons with intellectual disability face as agents and adult citizens in their everyday life, and shows violation of fundamental human rights.     

Reason,grace and charity: Augustine and the impact of church doctrine on the construction of intellectual disability

This paper examines how early church doctrine influenced the construction of and response to intellectual disability. Though the main focus of the paper is on intellectual disability, much of the discussion is more broadly relevant to other types of impairments and human differences. The vehicle for this examination is the work of the key figure in the development and codification of church doctrine, Augustine, Bishop of Hippo (354–430 CE). The paper concludes that while church doctrine mitigated the stark association of reason and human value found in classical Greek thought, it did not engender an attitude of equality in this world. The ideas of grace and the ‘divine plan’, while opening up a limited space for acceptance and broad equality in the eyes of God, also reinforced and legitimated an inferior position in this world, leaving those considered to have an intellectual disability on the margins of social life and subject to a charity ultimately undertaken for the salvation of the giver, rather than for the welfare of the recipient. Subsidiary themes related to the construction of intellectual disability, such as ‘object lessons to the wise’ or as ‘monsters’, use as sources of amusement, innocence and their association with children and the charity ethic, are also examined.     

Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: Considerations for service development

Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programs for older carers occupied a unique place within the service system. The present paper discusses a study that further explored the functions of specialist programs for this group through a comparsion with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.     

Ethical challenges of life story research with ex‐prisoners with intellectual disability

This paper outlines the ethical considerations when engaging in life story research with ex‐prisoners with intellectual disability. Based on a study conducted in Queensland, Australia, the authors explore some of the challenges that have arisen through the lens of principle‐based ethics. The significant disadvantage experienced by ex‐prisoners with intellectual disability warrants further attention by social researchers, and care must be taken not to further harm this group through the research process. Issues pertaining to the broad ethical concepts of integrity, justice, respect for persons and beneficence are examined to identify the degree to which they can guide the actions of the life story researcher. Examples are given as to how the researcher responded to difficulties as they arose and the authors discuss ways forward from a principle‐based approach.     

Perspectives on austerity: the impact of the economic recession on intellectually disabled children

In 2008, the Republic of Ireland descended into the deepest period of economic recession since the Great Depression of 70 years before. In the aftershock of recession, research suggests that it has been the nation’s children who have been hit hardest. Within this, intellectually disabled children are considered a particularly vulnerable socio-economic group. Nonetheless, the impact and experience of the recession for intellectually disabled children has received little specific attention within policy and literature, and as a consequence remains poorly understood. This article aims to expand upon discussions by drawing out a number of key themes through a review of the relevant literature. Lessons learned from the review are then used to inform a discussion around policy implications. It is suggested that better pathways to justice and an improved presence of the voices of intellectually disabled children, and their families, at a macro-political level are required moving forward.     

Glorious Work: employment of adults with a learning disability in Guangzhou from the perspective of their parents

Promises and policies in ensuring employment opportunities for disabled people are stipulated in the State Laws and local regulations of the People's Republic of China. It is assumed that having a job implies better integration in society. However, the experience of young adults with learning disability in finding jobs tells a very different story. This article analyses the experience, perceptions and worries of parents of such young adults who are employed or have striven hard to obtain a job, comparing the ideal with a very different reality.     

Looking inside the bag of tools: creating research encounters with parents with an intellectual disability

This paper examines the development of fieldwork methodology in a study that investigated the parenting experiences and parent support needs of a group of parents with an intellectual disability. It considers the ways in which the original planning for the project changed as the fieldwork unfolded, requiring adaptations to our methodological expectations and in the process deepening our understanding of the phenomena we were studying and reinforcing for us the importance of relationships in fieldwork‐based research. Three themes in particular are considered that became central to this research: research relationships; safety for participants/positioning of the researcher; suspending assumptions about impairment and disability and influences on life experiences.     

Formative evaluation on a physical activity health promotion program for the group home setting

Physical inactivity and high rates of chronic conditions is a public health concern for adults with intellectual disability. Few health promotion programs target the group home setting which is the pre-dominant form of residential accommodation for persons with intellectual disability. A process evaluation of a physical activity health promotion program, Menu-Choice, was conducted with five group home sites for adults with intellectual and developmental disabilities. Menu-Choice assists group home staff in including physical activity goals within resident schedules. The physical activity program was designed based on theoretical frameworks, community-based participatory approaches, and established health promotion guidelines for adults with disabilities. Fourteen program coordinators (age M 39; 77% females), 22 staff (age M 39; 82% females), and 18 residents (age M 59; 72% females; 56% ambulatory) participated. Results from the fidelity survey and program completion highlight potential challenges with implementation. Findings will assist with the refinement of the program for continued implementation trials in the group home community.     

My home, your workplace: people with physical disability negotiate their sexual health without crossing professional boundaries

This paper aims to describe research that examined the views of people with physical disability, living in Australia, of their sexual well-being needs from their own perspective. We explored the impact their sexual well-being needs had on their relationships with professional carers. A social model of disability was used to understand how sexual well-being is facilitated or denied in community care. We also explored whether clients' sexual well-being needs could be met without carers or clients 'crossing the line'. Our findings indicate the multiple ways that 'professional boundaries' were negotiated between clients and professional carers. The data show that the location of the 'line' changed, depending on a range of personal, social, economic and environmental factors. The data also show a gap between the sexual well-being needs of people living with a physical disability and the level of support provided at the social and organisational levels. Suggestions are made for research and practice directions.     

Using video vignettes in research and program evaluation for people with intellectual and developmental disabilities: A case study of the Leadership for Empowerment and Abuse Prevention (LEAP) project

People with intellectual and developmental disabilities (IDD) are often excluded from meaningful participation in research and program evaluation for various reasons, including protocols and measures that are inaccessible for people with varying cognitive and communication abilities. Emancipatory research models emphasize the importance of inclusive research practices. Video vignettes are a promising tool for research and program evaluation with people with IDD because they are standardized, they use visual imagery rather than relying on written or verbal communication, and they allow for distance from sensitive topics. The Leadership for Empowerment and Abuse Prevention (LEAP) project used video vignettes to evaluate a healthy relationship program for people with IDD. The authors discuss the process of piloting various protocols and measures, which then ultimately led to the use of video vignettes in the evaluation.     

Politics of geographic exclusion: deinstitutionalization,hegemony and persons with intellectual disability in Israel

Deinstitutionalization is a core policy for the development of services for people with intellectual disabilities (ID) in western countries. Nonetheless, although a western country, deinstitutionalization is not well advanced in Israel. In order to shed light on this phenomenon, we explore the hegemony of ID as reflected in Israeli legislation. The analysis shows a biomedical hegemony; ID is depicted as a form of medical and social deviance. Israel’s legislation reflects paternalistic views of persons with ID, who are largely seen as vulnerable objects of pity, to be cared for and protected.     

Problems associated with choice and quality of life for an individual with intellectual disability: a personal assistant's reflexive ethnography

A gap exists between research and practice within the field of intellectual disability. In particular, researchers suggest that personal choice enhances quality of life. Following Bourdieu's suggestion to focus on improving the practice of theory rather than the theory of practice, this paper is a reflexive ethnography detailing my struggles to provide choice to an individual who, it turned out, cannot think in the ways necessary to make choices that would improve his subjective quality of life. A narrative is included with the hope of revealing social processes outside and within the field of intellectual disability and to provoke discussion regarding problems with choice and quality of life in the field.     

Advancing social inclusion in the neighbourhood for people with an intellectual disability: an exploration of the literature

The shift from segregated facilities to community settings did not automatically lead to social inclusion for people with an intellectual disability (ID). Policies are increasingly decentralized but little is known about the factors that are important to realize social inclusion in the neighbourhood. This literature study identifies five domains barriers and facilitators for social inclusion in the neighbourhood: individual characteristics, informal network, professional care, neighbourhood characteristics, and government policies. The findings suggest that social inclusion in the neighbourhood is a dynamic process that shows a series of complex interactions between environmental factors and personal characteristics to provide opportunities for people with an ID. It is recommended to include the perspectives of people with an ID and other neighbourhood residents in future research on social inclusion. Specific attention is needed for the role of neighbourhood social capital in achieving social inclusion in the neighbourhood.     

The dynamics of support over time in the intentional support networks of nine people with intellectual disability

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.     

Exploring how the social model of disability can be re-invigorated: in response to Mike Oliver

In his 2013 article in Disability & Society, Oliver recommended that the social model should either be replaced or re-invigorated. I argue here that the social model’s current emphasis reflects the social conditions in which it was introduced, and that the model’s impact on disabled people’s lives would increase if its emphasis was to more accurately reflect the current social conditions in the geographical regions in which it is applied. In order to help foster its re-invigoration, I ask five questions for discussion on the way forward for the social model. I identified my questions through examining published writing on the scope of the social model and on the model’s relationship with other models of disability.     

Interviewing victims of sexual abuse with an intellectual disability: a dutch single case study

The approaching to use with people with an intellectual disability who are (suspected) victims of sexual abuse is a challenge for social professionals. Being at the mercy of professional facilities, the victims are in a vulnerable position. They have limited capacities to defend themselves against the intimidations of perpetrators and to deal with the consequences of the terrifying happenings. Finally, sexual abuse is a criminal offence. Much depends on the quality of the interviews. In the Dutch practice of forensic reactions to (suspected) sexual abuse of people with an intellectual disability, experience has been acquired with different types of interviewing.

With the help of a single case study between a health professional and a victim, these forms of interviewing are demonstrated. The professional pursuit is to let the client disclose what has happened in their own words. The study shows that in social health and welfare practices the professional task is to navigate between, on the one hand, the communicative space for the client to provide free recall and, on the other hand, the need to provide help to clients with an intellectual disability to verbalize inner cognitions and emotions.     

Overprotection in the lives of people with intellectual disability in Malta: knowing what is control and what is enabling support

A study of overprotection in the lives of persons with intellectual disability in Malta was carried out on the principles of inclusive research. Focus groups were held with people with intellectual disability, parents of people with intellectual disability, and those working with persons with intellectual disability. Overprotection is a disabling barrier. Its effects were identified in employment, leisure time, intimate relationships, and the use of public transport, money, and mobile phones. People with intellectual disability who experience overprotection live very structured lives. They cannot develop their skills, abilities, and potential. Furthermore, they cannot live their life on their own terms, but on terms determined by others. This creates a sustained dependence on others, especially the family. It is important that a balance is achieved between protection and enabling support. Persons with intellectual disability should be given the support they need to express their wishes and act on them.