Stuart Todd

Family Dilemmas and Secrets: Parents' disclosure of information to their adult offspring with learning disabilities

This paper describes the role parents play in providing knowledge of learning disability to their adult offspring with learning disabilities. Data were derived from an in-depth qualitative study of the nature of parent-adult-offspring co-residence. The findings reveal that while parents recognised and had to deal with the stigma learning disability exerted in their own lives, they had taken steps to prevent their adult offspring from having to deal with similar difficulties. It is argued that it remains the case that learning disability is treated as a stigmatised identity and as such is rendered invisible through the strategic control of information. However, findings point towards the conclusion that there has been a cultural reversal in how this process is managed.

Careers in caring: the changing situations of parents caring for an offspring with learning difficulties

Drawing on information from a survey sample of individuals with learning difficulties aged ≥5 years in 4 districts in Wales, data are presented on the ages of parents and offspring, household composition, the level of dependency of offspring, expectations of progress towards independence and the levels of service and informal support received by individuals or families. Most people with learning difficulties living in the family home were adults, although the proportion decreased with age. Transition from the family home was particularly related to certain age groups and to the presence of a single parent rather than two. Primary carers were predominantly mothers. Parental ages ranged from 75 years, on average differing from that of the offspring with learning difficulties by about 30 years. Single parent households became more common with increasing age, although these were also relatively frequent among the youngest age group, and there was a steady movement out of the home of siblings. Individuals tended to increase skills with time and the adults in family homes were significantly less dependent than the children. However, parents of children had greater optimism for continued progress in areas where offspring were not fully independent than did those of adults. Service support was more available to families of younger than older adults and the level of service planning for individuals aged 2S years or over was severely deficient. The results illustrate the variability in circumstance of family members as they grow older. A much more close understanding is required of how families age, how the relationships between members change and how the needs and ambitions of the family evolve, both individually and collectively, for service support to be matched to family circumstance.

Death Does Not Become Us

Abstract The social issues of death, dying and bereavement represent important but neglected research areas, and such issues need attention both for practical reform and for deciphering what living with intellectual disability entails. The difficulties which life poses for people with intellectual disabilities may well persist in the times before and after death. As research issues they offer not only potential practical significance, but also a means of determining the social status and value of people with intellectual disabilities. This paper reviews the issues of death and dying from the viewpoint of sociological research and seeks to identify the ways death and dying have been treated within the research literature on living with intellectual disability. It is suggested that these issues have been discounted with some important consequences for the way intellectual disability is perceived. Important areas for research in this area are highlighted.

More recognised than known: The social visibility and attachment of people with developmental disabilities

This paper sets out to examine the community activities and social networks of people with developmental disabilities living in the community. Data were obtained from the first phase of a longitudinal evaluation of a policy initiative in the province of Wales, aimed at improving the lifestyles of people with developmental disabilities. The results show that people were engaged in a wide range of community activities but that opportunities for wider interactions with nondisabled people were restricted. In addition, the presence of non-disabled people in the friendship networks of people with developmental disabilities was also limited.

Death, Dying and Intellectual Disability Research

In the 10 years since it was claimed that death and dying were perhaps too emotive and certainly too incongruous for intellectual disability researchers (Todd 2002), there has been a small but growing international interest in this field of study. This changing attitude towards death and dying within intellectual disability has been marked by two key events. Firstly, a changed view on what counts as a ‘significant death’. Secondly, there has been an acceptance that the deaths and periods of dying people with intellectual disability present important personal, academic and professional challenges. Early work in this sensitive field tended to be concerned with bereavement and, in particular, the impact the death of a loved one, usually a family member, had upon the life and well-being of people with intellectual disability. At this time, death itself was not so much the focus for scholarly activity. Rather, it was a device used to cement the notion that people with intellectual disability had emotional selves, capable of reflection and feeling. Within this bereavement literature, seldom was it entertained that the death of people with intellectual disability might have potent meaning for someone who in turn loved them. That death comes to people with intellectual disability as well as to the rest of us seemed to be simply overlooked, as was any recognition that a relationship with a person with intellectual disability could be positive and grieved for. The idea that people with intellectual disability might leave a social legacy was not entertained. This absence of thought that people with intellectual disability might just leave a gap in society when they die, no doubt, related to the general devaluing of people with intellectual disability, including their relationships with others. Now, people with intellectual disability form a part of the huddle of humanity, which Berger (1963) described as one bound together in the face of death. Perhaps the final step in the move towards full inclusion is the admission of the relevance of death. The study of death and intellectual disability, as for other populations, encourages and reiterates a sense of belonging and community, a sense that death itself threatens. A turn in bereavement research has led from building evidence that people with intellectual disability are affected by death, to considering how to support people through their bereavement experiences, and examples of this are provided in this special issue. The impact the death of a person with intellectual disability has on others remains an important but less addressed concern for research. Perhaps another reason for the lack of interest in death and dying within intellectual disability research was that for almost a century, the lives and deaths of people with intellectual disability were sequestered, hidden behind the walls of the institution. Indeed, institutionalization could be characterized as a form of death, ‘social death’ (Sudnow 1967). Blatt & Kaplan (1966), for example, described institutionalized patients as being neither dead nor alive but in purgatory. Living people with intellectual disability were treated as if they were as good as dead. Hidden and removed from society, their social death preceded their biological one, sometimes by many decades. It is interesting to note that the wider and more general interest in the social dimensions of death occurred at the same time as the de-institutionalization of people with intellectual disability. This was a period of change to the template of social control that was applied to all excluded groups, for example people with intellectual disability, the dead and the dying (Baudrillard 1976). The deaths of people with intellectual disability became more public and hence less easily overlooked. The rise of

Developing research priorities for palliative care of people with intellectual disabilities in Europe : a consultation process using nominal group technique

BackgroundEmpirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe.MethodsA two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance.ResultsA total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities.ConclusionsThe proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding.

Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability:

Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. Conclusions Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.

Learning to take the world seriously An ethnographic study of the management of knowledge in a special school for children with intellectual disabilities

This article reports on an ethnographic and sociological study of the curriculum inside a special school for students with severe intellectual disabilities in the UK. There are few such studies since it is the routing of children into the special education system that has been sociologically captivating. Bernstein’s analytical approach to the study of curricula is proposed as useful since it draws attention to the structure of the curriculum and is less concerned with assumptions about its content. It also highlights the social messages that are embedded within the curriculum. The data suggest that two codes were in operation within the curriculum. The first was designed to draw the out-of-school experiences of students into the classroom for greater scrutiny. The second involved the strict regulation of ‘dangerous’ knowledge, that is sexual knowledge. The implications of findings are discussed in relation to curriculum development, self-identity and the strength and nature of social boundaries.