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Rationale This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes. Methods Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample. Findings The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%). Implications The implications for end-of-life care and mortality research are discussed.

Background: Family carers of people with profound and multiple intellectual disabilities (PMID) experienced a reduction in healthcare services due to the COVID-19 pandemic. Many subsequently turned to Non-Government Organisations who worked to support families. However, little research has sought to capture the experiences of family carers or identify effective interventions which might support them. To address these concerns we explored the views of Non-Government sector workers across the UK and Ireland who supported families people with PMID during the COVID-19 pandemic. We also sought to explore their views on the characteristics of online support programmes for family carers.Methods: This study employed a qualitative design using focus groups with participants (n=24) from five Non-Governmental Organisations across the UK and Ireland. Interview schedules included questions on challenges, supports, coping and resources which helped during lockdown restrictions. Focus groups were held online, were audio recorded and transcribed verbatim. The resulting transcripts were pseudonymised and subjected to thematic analysis. Findings: Four themes were identified (i) ‘mental health and well-being’, (ii) ‘they who shout the loudest’, (iii) ‘lack of trust in statutory services’ and (iv) ‘creating an online support programme’. Mental health and well-being emerged as the largest theme and included three subthemes named as ‘isolation’, ‘fear of COVID-19’ and ‘the exhaustion of caring’. Conclusions: The COVID-19 pandemic has increased the vulnerability of family carers who were already experiencing difficulties in accessing services and supports for their families. While Non-Government Organisations have been a crucial lifeline there is urgent need to design services, including online support programmes, in partnership with family carers which adequately address their needs.

Aim: This article explores ways of maximising engagement of intellectual disability staff as research participants, research advisers and research implementers. Method: The authors describe and reflect on a three-phased strategy in recruiting front-line staff ( n = 690) working for intellectual disability service providers ( n = 25) to participate in a UK-wide anonymous online survey about death, dying and bereavement. Results: Important elements in engaging participants were: involving stakeholders at all stages of the research process, which includes: building relationships with participating organisations; enlisting organisational management support at all levels; an attractive and well laid-out collection tool; a well-structured recruitment strategy; time and flexibility; and a varied and targeted dissemination strategy. However, the recruitment method had limitations, in particular around representativeness, bias and generalisability. Conclusions: Staff in intellectual disability services can be enthusiastic and invaluable research participants. Active engagement between researchers, participating organisations and stakeholder groups is key to ensuring involvement of intellectual disability staff with research.

BackgroundGiven the much greater COVID-19 mortality risk experienced by people with intellectual disabilities, understanding the willingness of people with intellectual disabilities to take a COVID-19 vaccine is a major public health issue.MethodIn December 2020-February 2021, across the United Kingdom 621 adults with intellectual disabilities were interviewed remotely and 348 family carers or support workers of adults with intellectual disabilities with greater needs completed an online survey, including a question on willingness to take a COVID-19 vaccine if offered. Results87.0% of interviewees with intellectual disabilities were willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having already had a flu vaccine, gaining information about COVID-19 from television but not from social media, and knowing COVID-19 social restrictions rules. 81.7% of surveyed carers of adults with intellectual disabilities with greater needs reported that the person would be willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having a health condition of concern in the context of COVID-19, having had a flu vaccine, being close to someone who had died due to COVID-19, and having shielded at some point during the pandemic.ConclusionsReported willingness to take the COVID-19 vaccine is high amongst adults with intellectual disabilities in the UK, with factors associated with willingness having clear implications for public health policy and practice.

Background: considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered.Method: this paper forms part of a larger cross‐sectional study of deaths in a defined population of adults with intellectual disabilities. Data from VOICES‐SF were obtained from intellectual disability service providers for each death within their supported population over 18 months, 149 decedents in all.Results: only 34.2% of deaths were anticipated, death was often sudden or followed a short illness. Four dying trajectories were identified, and categorized by length of illness, service use, care outcomes, symptom control and cause of death.Conclusions: recognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying and better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed.

This article describes an exploratory study of deaths of people with intellectual disabilities (IDs) that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes. Data were obtained from service records and telephone interviews on 66 deaths occurring within a 2-year period. The findings suggest that death is an important but relatively rare event within ID services. This rate of death was influenced by the age structure of the population. Most of the deaths occurred within a hospital setting. Cause of death did not have much impact upon place of death. However, setting characteristics seemed to have some influence. As an exploratory study, lessons for future population-based research in this area are addressed.

Background Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement. Method Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi-squared statistics. Results 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement. Conclusion Death affects many people with intellectual disability. Staff require training and support in communicating death.

Background: population‐based data are presented on the nature of dying in intellectual disability services.Methods: a retrospective survey was conducted over 18 months with a sample of UK‐based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES‐SF.Results: the observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life.Conclusion: death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.

The All-Wales Mental Handicap Strategy was received in 1983 as a forward looking policy designed to deliver a range of community services to people with mental handicaps and their families guided by a clear articulation of principles. A ten-year period was set, in which constituent counties would begin the process of developing local services to replace those traditionally available, aided by additional central finance especially allocated for the purpose. The commitment to achieve considerable service change in a way that accorded with a set philosophy led the Welsh Office to take concerted action to manage the Strategy and monitor its progress, attending to the planning infrastructure in counties, the basis for estimating needs, the content of plans, the formulation of progress reports, and the setting of priorities for action. This paper describes the way the Welsh Office has revised mechanisms for implementation of the Strategy in its first five years. It also reports changes in service provision achieved between 1983 and 1988. There is evidence of positive change in line with the aspirations of the Strategy, although progress in the initial years has been less good than may have been hoped. Time has been required for counties to make an effective response to the Strategy initiative. An acceleration of service development in designated core areas is anticipated over the second half of the ten-year period.

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.

The All-Wales Mental Handicap Strategy (AWS) pledged government leadership and additional resources for the task of developing community based residential, domiciliary, respite, daycare and professional services for people with mental handicaps and their families throughout Wales. Ultimately, the authors of the AWS sought to affect for the better the extent to which people with mental handicaps experience typical community life. A large random sample of people with mental handicaps in four diverse districts was used to track changes in services received, professional input, involvement in individual planning, the number of community activities pursued, and the size and range of individuals' social networks across the middle 4 years of the AWS. The balance between private housing and service residence remained unchanged although, with the ageing of the cohort, there was a decrease in the proportion living with parents and an increase in those living independently or in another family situation. There was an increase in the availability of residential services in the form of ordinary housing and an associated contraction in large congregate care facilities. However, not all moves were towards more ordinary living. Some people moved from large statutory sector specialist facilities to other atypical forms of residence, as did some people from family homes. Family support services in the form of family aides and short-term care increased significantly, but indicators still suggest that an expansion of these services is merited. Day services diversified slightly, but without affecting the major role of the traditional centre. There was a decrease in the numbers receiving a fulltime service. Only a third of the sample received regular individual plan reviews of the services they received and the developmental goals set in their name. In general, individuals were involved in a greater number of community activities that brought them into contact with other citizens. However, such an increase has not led to significant changes in the size or composition of people's friendship networks. Overall, the changes in service provision and family and user experience have been in line with the direction set by the AWS. However, the degree of change still required before the new pattern of services envisaged by the AWS is substantially in existence, or the experience of people with mental handicaps conforms with the guiding principles which underpin it, is considerably greater than that achieved after 7 of its initial 10 years.

The parental role can be an enduring one for many people with sons or daughters with learning disabilities. Despite this, there has been little research on parents' experiences during their offspring's adult years. The present paper examines the different dimensions of work undertaken by parents in the care of their adult offspring and how they felt these had changed over the years. The paper also explores how parents seek to combine parental work with other aspects of their lives. Data for this study were derived from a qualitative, in-depth study of the experiences of parents of 33 co-resident adult offspring with learning disabilities. The data suggest that the long-term nature of parenting involves both stability and change. For example, some parents had experienced a depletion of physical resources and enthusiasm that made it difficult for them to carry out some aspects of parental work. Parents had also met new difficulties, such as the handling of the disclosure of learning disability to their offspring, as well as to members of the public. For all parents, parenting had remained an extensive involvement, so that they still found it difficult to meet the demands of parenting, and their own non-parental tasks and interests. The data also indicate that service intervention needs to be based on an appreciation of the temporal and personal difficulties in parents' lives, and that service intervention can add to the perceived burden of carers without such an appreciation.

Background This paper describes a study of one aspect of the lives of mothers of children with intellectual disabilities. It focuses on their perspectives of their dealings with the professional and service worlds. Much attention has been given in recent years to developing and co-ordinating a multiprofessional and multiagency network of support around families. Although such aims can be seen as beneficial for families, there is also good reason to expect these to present problematic experiences for family carers. Methods Data are presented and analysed in this paper on mothers' perceptions of their dealings with professionals. The sample consisted of 30 mothers of young people with intellectual disabilities. The data were obtained by qualitative interviews. Results and discussion Overall, the study confirmed that mothers' dealings with professionals were highly problematic for them. They felt that such encounters could be based upon conflict and that their worth and character as mothers were being continually scrutinized. However, the data show that mothers were willing to challenge professional perspectives of their children and their needs. They embraced advocacy for their sons and daughters as part-and-parcel of being a mother. However, in doing so, they were much more hesitant and reluctant to raise any needs and aspirations for their own lives. They fear that in giving these voice, they could be seen and typified as selfish mothers. That is, their struggles to be taken as advocates for their sons and daughters would be undermined. The implications of these findings for research and service development are discussed.

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.

Over recent decades, there has been a substantial increase in the proportion of women in the workforce with dependent children. However, this trend is not evident for mothers of children with disabilities. Their employment levels are greatly reduced. The present paper examines the nature of the restrictions which affect the employment participation of these mothers and explores the meaning work has for them. The data presented in this paper were derived from qualitative interviews with 18 mothers of children with disabilities aged between 5 and 15 years. These mothers found employment difficult. They encountered unusual time demands, and a lack of adequate and affordable child care. Furthermore, they felt that their employment opportunities were restricted by attitudes prevalent in society concerning appropriate roles for women, especially mothers of children with disabilities. The lack of opportunities to engage in employment led, in varying degrees, to feelings of isolation, a lack of fulfilment and low self-esteem. The mothers felt that they were on the periphery of society with little release from the pressures of caring. Mothers who had part-time jobs often did poorly paid work of low status, thereby encountering few opportunities to use their skills and abilities to the full. Those who attempted a full-time job experienced stress from the dual demands of home and work, and from a fear that they were failing as mothers. The present paper highlights areas which require attention to improve the employment experience of these mothers.

The article summarises the findings of an independent evaluation of three years' progress in planning for the AWS. Although parental involvement has been high, and joint working between health and social services departments has improved over the three years, involvement of local education authorities and people with mental handicaps must be increased if the ideals of the AWS are to be attained.

National strategies for the development of services for specific client groups are rare in Britain, particularly strategies to which governments pledge significant long term financial investment. This paper attempts to guage the impact of one such strategy, the All Wales Strategy for the Development of Services for Mentally Handicapped People (AWS) (Welsh Office, 1983) by comparing the goals of the AWS with changes in the nature and coverage of services which have followed its inception. Data on the provision of residential, day, education and family support services in Wales were collected in 1995 from county annual plans, Welsh Office statistical returns and questionnaires to county officers. These sources were cross referenced and the data compared with those reported in a companion paper (Beyer et al., 1991) for 1983 (the first year of the AWS) and 1988. Between 1983 and 1995, deinstitutionalisation accelerated, residential services were reprovided by combined statutory and independent sector action, size of residential settings reduced considerably, the range of day activities diversified, mainstream education was available to more children with learning disabilities, respite care became largely community based and the availability of domiciliary support increased significantly. Although the pace of change quickened between 1988 and 1995 compared to that in the first five years of the AWS, a wholesale reorientation of traditional services is far from complete. Changes in service provision in Wales during the course of the AWS are compared where possible to development elsewhere in Britain.

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.

Continuing the theme of caring for vulnerable populations from January, Stuart Todd reflects on the care of people with learning disabilities at the end of their lives.

The experiences of parents with adult offspring with learning disability and the meanings their parental careers have for them, has been the subject of very little empirical research. In this paper we describe and examine some of the features that gave shape and meaning to the day to day lives of parents of 33 co-resident adults with learning disabilities. Their accounts of their situations revealed that 'time' was a factor of some importance. Participants suggested that socialisation into the parental role was one that continued over the life course. In addition, they also felt that the services they received were based upon an inadequate and too narrow an understanding of how they experienced 'time'. The data reveal that both 'over time' and 'in time', parents struggled to maintain a set of aspirations for a typical life. The data show that for many parents there was a slow accommodation to the constraints of service provision and, as a result, their needs for service support became less extensive.

The last decade has witnessed a notable growth in instrumental family support services. While there exists a considerable literature on levels of consumer satisfaction with support services, their impact upon parents' commitment to the parental role has been less well addressed. Employing data derived from a qualitative, indepth study of the experiences of parents of 33 co-resident adult offspring with intellectual disabilities, this article examines some features of parents' lives which shape parents' needs for support and their assessment of the adequacy of support received. Support services were positively received in the way they interrupted, what would otherwise be, a continuous cycle of care. However, for some parents the nature of provision was such that support services heightened rather than moderated their sense of living a restricted lifestyle. Support services were insensitive to the life course dimension of parents' lives, operating upon a notion that parents required only respite. The findings suggest that support services need to adopt a more rounded view of parents if effective help is to be provided to them. This would include an understanding that parents wish to be creative with the time liberated by support services. The development of support services is discussed in terms of two phases. The first phase, and that which currently predominates, involves supporting parents through sharing the parental workload. The second, and less advanced phase involves supporting the person and his/her range of personal aspirations and interests. The implications which this latter phase may have for other forms of service provision are briefly discussed.

With personalised prescribing, contact lens recommendation is centred on patient needs and eye physiology with modality and price becoming secondary consideration. John Meyler, Brian Pall and Stuart Todd explain

Background Research on staffed housing for people with intellectual disability has identified the challenges in achieving postitive quality of life outcomes. However, a less well considered dimension of such services is that they are places of living and dying. This paper looks at the experiences of staff in dealing with issues of death and dying. Method In depth qualitative interviews were held with 22 staff in 5 different providers and who had experienced, in total, 27 deaths of people with intellectual disability. Results The data highlight that staff felt providing a good quality of care at the end of life was an important but unrecognised dimension of their work. This work could be broken down into several different phases, dying, death and beyond death. Bad deaths were felt to be those deaths which prevented staff from ‘being there’ with individuals over those phases.

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.

Described the vocational situations of 99 Ss with severe learning difficulties (aged 16–24 yrs) who were either living at home with carers or in small living situations of 6 or fewer people. Few people were found in ordinary (as opposed to specialist, educational, or vocational) settings. Of school-aged children, 73% were receiving their education in a special school. The majority of Ss (aged 19–21 yrs) attended an Adult Training Center (ATC) part or full time, and 12% were in some form of employment. 80% of Ss aged 22–24 yrs attended ATCs, and no one was in any form of employment activity. Respondents indicated a high level of dissatisfaction with the vocational services currently offered.

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.

Background This paper seeks to understand and conceptualize the experience of mothers of adolescents with intellectual disabilities (IDs) at a time in their lives which others have characterized as ‘mid-life’ or the ‘middle years of parenting’. The concerns of the paper are the lifecourse concerns in mothers’ own lives and with biographical elements of becoming and being such a parent. Methods Qualitative interviews were conducted with mothers of adolescents with IDs. The average age of mothers was 48 years. Typically parents were interviewed on two to three occasions. Results The data suggest that despite the difficulties they faced, these parents had constructed a ‘life-as-ordinary’ in the early phase of their parental careers. They saw themselves as ‘ordinary mothers’. However, the social content and events of the middle years of parenting prompt a realization that their lives and, for some, their sense of ‘self’, are undergoing considerable change. Mothers are forced to look over their lives to find the meaning and significance of these events. For some, there is biographical reinforcement. For others, there is only disruption. Discussion The overall picture of these years is one of considerable changes and challenges, and underlines the need for a focus on the lifecourse concerns of parents as well as their children. The implications of the data for further research and service development are discussed in the context of identity theory.

In addition to describing how the concept of stigma continues to be a pervasive influence in encounters between people with intellectual disability and others, the present study suggests that the management of this situation has passed into the control of care staff. An ethnographic study of young adults and community relationships suggests that the activities of staff are crucial in shaping the social profile of people with intellectual disability. The views of care staff about the taken-for-granted rights which characterize presence and participation in the community domain encourage them to adopt a semi-insulation approach to their work. Staff extend this approach by adopting information control strategies to conceal important information from students. The present author argues that there is a need for on-going research into staff activity in the community domain.

Nominated representatives from the various stakeholder interests, i.e. social services, health, education, voluntary organizations, parent groups and self-advocacy groups, involved in the implementation of the All Wales Strategy for the development of services for people with intellectual disability were interviewed 2 years after the end of the initial 10-year phase. Interviewees were asked to reflect on the strengths and weaknesses of policy implementation, including: changing priorities, planning arrangements, agency roles, central guidance and financial mechanisms, consumer participation, and the impact of more recent policy or structural developments. Despite recognition of the leadership of the Welsh Office, the shift in thinking achieved, the developments made in joint agency collaboration and in consumer participation in planning, and an increasing competence to plan effectively over time, the overriding perception was that more could have been made of the opportunity afforded by the clearest and best resourced central government policy within the UK in this area. At the heart of this judgement lay concerns about pragmatic rather than strategic planning, a failure to link annual service developments to a final comprehensive end point and a related failure to integrate planning to meet community needs with hospital resettlement. Factors which may have contributed to these weaknesses are discussed, as are lessons for subsequent community care policy.

This article outlines the development of evaluative methods within the field of mental handicap services. It suggests that evaluators have too often taken for granted the tacit assumptions underlying service models, using these to determine the criteria for evaluating success. It argues that evaluators should be more explicit about the values they adopt, and what patterns of life services should be enabling people to achieve. By more closely linking evaluation criteria to what people with a mental handicap should achieve, evaluation can become more effective in promoting positive change in service models. The article describes an approach developed by the authors for the evaluation of the ‘All-Wales Strategy for the Development of Services for Mentally Handicapped People’.