Background: UK austerity policies of the last decade have resulted inreductions to the amount of ... more Background: UK austerity policies of the last decade have resulted inreductions to the amount of services, care and support available forpeople with intellectual and developmental disabilities, potentiallyimpacting on their social lives. This study provides empirical evidenceregarding the experiences of managers of services which support peo-ple with intellectual and developmental disabilities.Method: Eight managers of five charitable services and one managerof a government agency in the UK took part in semi-structured inter-views about how cuts in funding had affected them, their services andthe social lives of people with intellectual and developmental disabil-ities. Responses were analysed using Interpretative PhenomenologicalAnalysis.Results: Many managers reported feeling unrelenting, significant andwide-ranging loss, including loss of shared understandings of care andloss of meaningful relationships with funders. Loss of equitable treat-ment of people with intellectual and developmental disabilities wasalso identified. Opportunities for social network maintenance anddevelopment were affected.Conclusions: The sense of loss identified in this study across a rangeof areas and the negative impact of poor relationships with funderssuggests that both people with intellectual and developmental disabil-ities and managers experience personal and social loss when services, care and support are cut
Background: Communication is a human right. Children and adults withprofound intellectual and mul... more Background: Communication is a human right. Children and adults withprofound intellectual and multiple disabilities experience profounddevelopmental delay, and communication, mobility and sensory difficul-ties, restricting their access to this basic right. A range of communica-tion interventions is available to increase interaction and participation,but there is limited high-quality supporting evidence. The aim of thispaper is, through a systematic review, to identify evidence-based com-munication interventions for practitioners and to inform the design offuture research.Methods: A systematic review was undertaken, conforming to PROS-PERO guidelines. Quality appraisal was conducted using Crowe's Criti-cal Appraisal Tool (CCAT). Findings are reported according to PRISMA.Results: Few good-quality evaluations of communication interventionwere found; however, some cautious recommendations can be madefor teaching and therapy. Challenges to research rigour include thediversity of children and adults with profound intellectual and multipledisabilities, small sample sizes and difficult decisions regarding whoshould intervene, assessment consistency, acceptable interventionintensity and the management of fidelity.Conclusions: Whilst further high-quality research is needed, someinterventions with either cognitive or interactive bases can be cau-tiously recommended. Researchers could consider greater use of sin-gle case experimental designs and the involvement of parents,teachers and therapists in delivering intervention
Introduction: Previous research has conceptualised culture across five dimensions: ‘alignment of ... more Introduction: Previous research has conceptualised culture across five dimensions: ‘alignment of power-holder values’, ‘regard for residents’, ‘perceived purpose’, ‘working practices’ and ‘orientation to change and ideas. This research explored these dimensions of culture in services rated as providing good support. Methods: Participant observations were carried out over 12 months, in two services (in different organisations) that supported 12 people with intellectual disabilities. In addition, interviews were carried out with 25 frontline staff or practice leaders and 3 senior managers. Results: Although services were rated as good initially, over time changes in quality were observed. Services differed in which areas of support were rated as good. These differences allowed exploration of the variations possible across each dimension of culture and the relationships between culture and practice. Whereas in previous research, services tended to show similar patterns across dimensions, this research revealed differences in performance across dimensions both within and between services. For example, service A was more open to change and ideas and stronger on regard for residents whilst weaker on working practices. Service B was better on working practices but weaker on regard. Implications: This study has illustrated the complexity of the relationships between dimensions of culture. This has implications for the ways in which culture can be measured and addressed
BackgroundViews on social care related quality of life (SCRQol) are typically gathered directly f... more BackgroundViews on social care related quality of life (SCRQol) are typically gathered directly from individuals or from proxy informants. Easy‐read options are available, although such methods may not be accessible to those with greater communication challenges.MethodsFifteen people with intellectual disabilities were interviewed about their SCRQoL using Talking Mats® (TM). A descriptive approach was taken to exploring what people had to say.ResultsParticipants reported high levels of satisfaction with living conditions and personal care routines. They were mostly satisfied with the level of choice and control they had and with their carers.ConclusionsPeople with intellectual disabilities who have greater communication challenges can make meaningful contributions to the assessment of the care they receive. Talking Mats is one tool which can be used to support people with intellectual disabilities to give their views.
Having a disability, in particular, an intellectual disability, is associated with Internet non-u... more Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being.
This powerful booklet aims to challenge our thinking about the way we communicate and interact wi... more This powerful booklet aims to challenge our thinking about the way we communicate and interact with autistic people and those with learning (intellectual) disabilities. The '10 Rules' concept sets out to be deliberately provocative, by suggesting ways in which people, services and environments can unconciously create problems and obstacles for those they seek to support. Each communication 'rule' speaks powerfully with the voice of the individual on the receiving end of services and practice. Together, the 10 rules provide a useful starting point for discussion and a catalyst for action. Each is followed by suggestions for positive practice. The booklet also contains additional background information on good practice, together with references and sources of further information. The booklet can be used for a range of purposes, including staff induction, awareness training, individual professional development and reflection, and discussions regarding service developmen...
BackgroundGiven the much greater COVID‐19 mortality risk experienced by people with intellectual ... more BackgroundGiven the much greater COVID‐19 mortality risk experienced by people with intellectual disabilities (ID), understanding the willingness of people with ID to take a COVID‐19 vaccine is a major public health issue.MethodIn December 2020 to February 2021, across the United Kingdom, 621 adults with ID were interviewed remotely and 348 family carers or support workers of adults with ID with greater needs completed an online survey, including a question on willingness to take a COVID‐19 vaccine if offered.ResultsEighty‐seven per cent of interviewees with ID 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. A percentage of 81.7% of surveyed carers of adults with ID with greater needs reported that the person would be willing to take a COVID‐19 vaccine, with willingness associated wi...
Background Parents of children with intellectual disability are 1.5–2 times more likely than othe... more Background Parents of children with intellectual disability are 1.5–2 times more likely than other parents to report mental health difficulties. There is a lack of clinically effective and cost-effective group well-being interventions designed for family carers of young children with intellectual disability. Aim To examine the feasibility of a randomised controlled trial of the clinical effectiveness and cost-effectiveness of the Early Positive Approaches to Support (E-PAtS) intervention. Design A feasibility study (including randomisation of families into a two-arm trial), questionnaires to assess the feasibility of proposed outcome measures (including resource use and health-related quality of life) and practitioner/family carer interviews. An additional question was included in an online UK survey of families, conducted by the research team to assess usual practice, and a survey of provider organisations. Setting Families recruited from community contexts (i.e. third sector, loca...
Background: UK austerity policies of the last decade have resulted inreductions to the amount of ... more Background: UK austerity policies of the last decade have resulted inreductions to the amount of services, care and support available forpeople with intellectual and developmental disabilities, potentiallyimpacting on their social lives. This study provides empirical evidenceregarding the experiences of managers of services which support peo-ple with intellectual and developmental disabilities.Method: Eight managers of five charitable services and one managerof a government agency in the UK took part in semi-structured inter-views about how cuts in funding had affected them, their services andthe social lives of people with intellectual and developmental disabil-ities. Responses were analysed using Interpretative PhenomenologicalAnalysis.Results: Many managers reported feeling unrelenting, significant andwide-ranging loss, including loss of shared understandings of care andloss of meaningful relationships with funders. Loss of equitable treat-ment of people with intellectual and developmental disabilities wasalso identified. Opportunities for social network maintenance anddevelopment were affected.Conclusions: The sense of loss identified in this study across a rangeof areas and the negative impact of poor relationships with funderssuggests that both people with intellectual and developmental disabil-ities and managers experience personal and social loss when services, care and support are cut
Background: Communication is a human right. Children and adults withprofound intellectual and mul... more Background: Communication is a human right. Children and adults withprofound intellectual and multiple disabilities experience profounddevelopmental delay, and communication, mobility and sensory difficul-ties, restricting their access to this basic right. A range of communica-tion interventions is available to increase interaction and participation,but there is limited high-quality supporting evidence. The aim of thispaper is, through a systematic review, to identify evidence-based com-munication interventions for practitioners and to inform the design offuture research.Methods: A systematic review was undertaken, conforming to PROS-PERO guidelines. Quality appraisal was conducted using Crowe's Criti-cal Appraisal Tool (CCAT). Findings are reported according to PRISMA.Results: Few good-quality evaluations of communication interventionwere found; however, some cautious recommendations can be madefor teaching and therapy. Challenges to research rigour include thediversity of children and adults with profound intellectual and multipledisabilities, small sample sizes and difficult decisions regarding whoshould intervene, assessment consistency, acceptable interventionintensity and the management of fidelity.Conclusions: Whilst further high-quality research is needed, someinterventions with either cognitive or interactive bases can be cau-tiously recommended. Researchers could consider greater use of sin-gle case experimental designs and the involvement of parents,teachers and therapists in delivering intervention
Introduction: Previous research has conceptualised culture across five dimensions: ‘alignment of ... more Introduction: Previous research has conceptualised culture across five dimensions: ‘alignment of power-holder values’, ‘regard for residents’, ‘perceived purpose’, ‘working practices’ and ‘orientation to change and ideas. This research explored these dimensions of culture in services rated as providing good support. Methods: Participant observations were carried out over 12 months, in two services (in different organisations) that supported 12 people with intellectual disabilities. In addition, interviews were carried out with 25 frontline staff or practice leaders and 3 senior managers. Results: Although services were rated as good initially, over time changes in quality were observed. Services differed in which areas of support were rated as good. These differences allowed exploration of the variations possible across each dimension of culture and the relationships between culture and practice. Whereas in previous research, services tended to show similar patterns across dimensions, this research revealed differences in performance across dimensions both within and between services. For example, service A was more open to change and ideas and stronger on regard for residents whilst weaker on working practices. Service B was better on working practices but weaker on regard. Implications: This study has illustrated the complexity of the relationships between dimensions of culture. This has implications for the ways in which culture can be measured and addressed
BackgroundViews on social care related quality of life (SCRQol) are typically gathered directly f... more BackgroundViews on social care related quality of life (SCRQol) are typically gathered directly from individuals or from proxy informants. Easy‐read options are available, although such methods may not be accessible to those with greater communication challenges.MethodsFifteen people with intellectual disabilities were interviewed about their SCRQoL using Talking Mats® (TM). A descriptive approach was taken to exploring what people had to say.ResultsParticipants reported high levels of satisfaction with living conditions and personal care routines. They were mostly satisfied with the level of choice and control they had and with their carers.ConclusionsPeople with intellectual disabilities who have greater communication challenges can make meaningful contributions to the assessment of the care they receive. Talking Mats is one tool which can be used to support people with intellectual disabilities to give their views.
Having a disability, in particular, an intellectual disability, is associated with Internet non-u... more Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being.
This powerful booklet aims to challenge our thinking about the way we communicate and interact wi... more This powerful booklet aims to challenge our thinking about the way we communicate and interact with autistic people and those with learning (intellectual) disabilities. The '10 Rules' concept sets out to be deliberately provocative, by suggesting ways in which people, services and environments can unconciously create problems and obstacles for those they seek to support. Each communication 'rule' speaks powerfully with the voice of the individual on the receiving end of services and practice. Together, the 10 rules provide a useful starting point for discussion and a catalyst for action. Each is followed by suggestions for positive practice. The booklet also contains additional background information on good practice, together with references and sources of further information. The booklet can be used for a range of purposes, including staff induction, awareness training, individual professional development and reflection, and discussions regarding service developmen...
BackgroundGiven the much greater COVID‐19 mortality risk experienced by people with intellectual ... more BackgroundGiven the much greater COVID‐19 mortality risk experienced by people with intellectual disabilities (ID), understanding the willingness of people with ID to take a COVID‐19 vaccine is a major public health issue.MethodIn December 2020 to February 2021, across the United Kingdom, 621 adults with ID were interviewed remotely and 348 family carers or support workers of adults with ID with greater needs completed an online survey, including a question on willingness to take a COVID‐19 vaccine if offered.ResultsEighty‐seven per cent of interviewees with ID 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. A percentage of 81.7% of surveyed carers of adults with ID with greater needs reported that the person would be willing to take a COVID‐19 vaccine, with willingness associated wi...
Background Parents of children with intellectual disability are 1.5–2 times more likely than othe... more Background Parents of children with intellectual disability are 1.5–2 times more likely than other parents to report mental health difficulties. There is a lack of clinically effective and cost-effective group well-being interventions designed for family carers of young children with intellectual disability. Aim To examine the feasibility of a randomised controlled trial of the clinical effectiveness and cost-effectiveness of the Early Positive Approaches to Support (E-PAtS) intervention. Design A feasibility study (including randomisation of families into a two-arm trial), questionnaires to assess the feasibility of proposed outcome measures (including resource use and health-related quality of life) and practitioner/family carer interviews. An additional question was included in an online UK survey of families, conducted by the research team to assess usual practice, and a survey of provider organisations. Setting Families recruited from community contexts (i.e. third sector, loca...
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