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Abstract Background Older people with intellectual disabilities and their families report a lack of support for planning for parental death and transitions in care. This article aims to demonstrate the process of co‐designing resources to support older people with intellectual disabilities and their families to plan for the future. Methods Following interviews and focus groups with older people with intellectual disabilities and their families, we used an adapted experience‐based co‐design process to develop planning ahead resources. This included a ‘trigger film’ summarising findings from the earlier interview study, 12 co‐design workshops and a user feedback phase. Results The co‐design group developed a set of 102 ‘Planning Ahead Cards’ to help families to talk about the future and prepare for meetings with social care professionals. The group made decisions about the content, format and design of resources, and how co‐design workshops would run. The user feedback phase led to changes to the cards, and families and stakeholder groups suggested that they would be useful for planning ahead. Conclusion The Planning Ahead Cards may facilitate planning for parental death and transitions in care for older people with intellectual disabilities and their families. The co‐design approach was key to ensuring that the resources were useful and accessible for families. Patient or Public Contribution People with intellectual disabilities and their families contributed to the design of the resources through the co‐design workshops and feedback phase. The research team includes a research assistant with intellectual disabilities who co‐facilitated co‐design workshops and co‐authored this article.

Background One-third to half of people with intellectual disabilities suffer from chronic constipation (defined as two or fewer bowel movements weekly or taking regular laxatives three or more times weekly), a cause of significant morbidity and premature mortality. Research on risk factors associated with constipation is limited. Aims To enumerate risk factors associated with constipation in this population. Method A questionnaire was developed on possible risk factors for constipation. The questionnaire was sent to carers of people with intellectual disabilities on the case-loads of four specialist intellectual disability services in England. Data analysis focused on descriptively summarising responses and comparing those reported with and without constipation. Results Of the 181 people with intellectual disabilities whose carers returned the questionnaire, 42% reported chronic constipation. Constipation was significantly associated with more severe intellectual disability, dysphagia, cerebral palsy, poor mobility, polypharmacy including antipsychotics and antiseizure medication, and the need for greater toileting support. There were no associations with age or gender. Conclusions People with intellectual disabilities may be more vulnerable to chronic constipation if they are more severely intellectually disabled. The associations of constipation with dysphagia, cerebral palsy, poor mobility and the need for greater toileting support suggests people with intellectual disabilities with significant physical disabilities are more at risk. People with the above disabilities need closer monitoring of their bowel health. Reducing medication to the minimum necessary may reduce the risk of constipation and is a modifiable risk factor that it is important to monitor. By screening patients using the constipation questionnaire, individualised bowel care plans could be implemented.

BackgroundPrevious research has shown that people with intellectual disabilities have limited sexual knowledge, which can be essential for developing positive sexuality. This study aimed to check the validity and reliability of an assessment tool (SexKunn) for measuring the sexual knowledge of people with intellectual disabilities in Norway. Further, we aimed to identify potential knowledge gaps among the participants and highlight their potential impactMethods37 people with intellectual disabilities completed one assessment. 20 participants then completed a retest. Clinicians’ (n=23) views on the assessment tool were measured to obtain face validity. Positive and negative agreement analysis was used to identify potential dimensions in the data.ResultsA weighted Cohen’s kappa for the test and retest of the overall scores was considered to be substantial. The clinicians described an acceptable face validity regarding high positive value scores and low negative burden scores. They also suggested improvements. The study identified that the participants lacked knowledge about female genitals, hygiene, appropriate touching/sexual acts with friends/intimate partners, and contraception.ConclusionsThe SexKunn is a feasible assessment tool to measure sexual knowledge in people with intellectual disabilities. A lack of sexual knowledge of people with intellectual disabilities may violate their sexual rights.

BackgroundResponsible digital care refers to any intentional systematic effort designed to increase the likelihood of a digital care technology developed through ethical decision-making, being socially responsible and aligned with the values and well-being of those impacted by it. ObjectiveWe aimed to present examples of action opportunities for (1) designing “technology”; (2) shaping the “context” of use; and (3) adjusting the behavior of “users” to guide responsible digital care for people with intellectual disabilities. MethodsThree cases were considered: (1) design of a web application to support the preparation of meals for groups of people with intellectual disabilities, (2) implementation of an app to help people with intellectual disabilities regulate their stress independently, and (3) implementation of a social robot to stimulate interaction and physical activity among people with intellectual disabilities. Overall, 26 stakeholders participated in 3 multistakeholder workshops (case 1: 10/26, 38%; case 2: 10/26, 38%; case 3: 6/26, 23%) based on the “guidance ethics approach.” We identified stakeholders’ values based on bottom-up exploration of experienced and expected effects of using the technology, and we formulated action opportunities for these values in the specific context of use. Qualitative data were analyzed thematically. ResultsOverall, 232 effects, 33 values, and 156 action opportunities were collected. General and case-specific themes were identified. Important stakeholder values included quality of care, autonomy, efficiency, health, enjoyment, reliability, and privacy. Both positive and negative effects could underlie stakeholders’ values and influence the development of action opportunities. Action opportunities comprised the following: (1) technology: development of the technology (eg, user experience and customization), technology input (eg, recipes for meals, intervention options for reducing stress, and activities), and technology output (eg, storage and use of data); (2) context: guidelines, training and support, policy or agreements, and adjusting the physical environment in which the technology is used; and (3) users: integrating the technology into daily care practice, by diminishing (eg, “letting go” to increase the autonomy of people with intellectual disabilities), retaining (eg, face-to-face contact), and adding (eg, evaluation moments) certain behaviors of care professionals. ConclusionsThis is the first study to provide insight into responsible digital care for people with intellectual disabilities by means of bottom-up exploration of action opportunities to take account of stakeholders’ values in designing technology, shaping the context of use, and adjusting the behavior of users. Although part of the findings may be generalized, case-specific insights and a complementary top-down approach (eg, predefined ethical frameworks) are essential. The findings represent a part of an ethical discourse that requires follow-up to meet the dynamism of stakeholders’ values and further develop and implement action opportunities to achieve socially desirable, ethically acceptable, and sustainable digital care that improves the lives of people with intellectual disabilities.

Abstract Background Evidence from the UK from the early stages of the covid-19 pandemic showed that people with Intellectual Disabilities (ID) had higher rates of covid-19 mortality than people without ID. However, estimates of the magnitude of risk vary widely; different studies used different time periods; and only early stages of the pandemic have been analysed. Existing analyses of risk factors have also been limited. The objective of this study was to investigate covid-19 mortality rates, hospitalisation rates, and risk factors in people with ID in England up to the end of 2021. Methods Retrospective cohort study of all people with a laboratory-confirmed SARS-CoV-2 infection or death involving covid-19. Datasets covering primary care, secondary care, covid-19 tests and vaccinations, prescriptions, and deaths were linked at individual level. Results Covid-19 carries a disproportionately higher risk of death for people with ID, above their already higher risk of dying from other causes, in comparison to those without ID. Around 2,000 people with ID had a death involving covid-19 in England up to the end of 2021; approximately 1 in 180. The covid-19 standardized mortality ratio was 5.6 [95% CI 5.4, 5.9]. People with ID were also more likely to be hospitalised for covid-19 than people without ID. The main determinants of severe covid-19 outcomes (deaths and/or hospitalisations) in both populations were age, multimorbidity and vaccination status. The key factor responsible for the higher risk of severe covid-19 in the ID population was a much higher prevalence of multimorbidity in this population. AstraZeneca vaccine was slightly less effective in preventing severe covid-19 outcomes among people with ID than among people without ID. Conclusions People with ID should be considered a priority group in future pandemics, such as shielding and vaccinations.

Background: There is a critical need for the development of dependable and valid anxiety assessment tools suitable for people with moderate to severe intellectual disabilities, particularly those who speak few or no words. Distinguishing anxiety from distress caused by physical discomfort (pain) or characteristics associated with autism, prevalent in this population, necessitates specialised assessment tools. This study (a) developed a parent-report anxiety questionnaire tailored for individuals with severe to moderate intellectual disabilities, potentially with a co-diagnosis of autism, and (b) evaluated the psychometric attributes of this novel measure. Methods: A comprehensive approach involving literature reviews, inspection of existing tools, and interviews with clinicians and parents guided the creation of the Clinical Anxiety Scale for People with Intellectual Disabilities. The tool was completed by parents or caregivers (N = 311) reporting on individuals aged 4 or older with intellectual disabilities. Results: Exploratory factor analysis indicated a four-factor structure encompassing anxiety, pain, low energy/withdrawal, and consolability. The anxiety factor explained the most variance in scores (26.3%). The anxiety, pain, low energy/withdrawal subscales demonstrated robust internal consistency (α = 0.81-0.92), and convergent, divergent, and discriminant validity. Robustness of these subscales was further evidenced by test-retest reliability (ICC = 0.79-0.88) and inter-rater reliability (ICC = 0.64-0.71). Subgroup analyses consistently demonstrated strong psychometric properties among individuals diagnosed with non-syndromic autism (N = 98), children (N = 135), adults (N = 175), and across diverse communication abilities within the sample. Moreover, individuals diagnosed with both autism and anxiety exhibited significantly higher scores on the anxiety subscale compared to those without an anxiety diagnosis, while showing no difference in autism characteristic scores. Conclusions: The findings indicate that the Clinical Anxiety Scale for People with Intellectual Disabilities is a promising measure for use across diverse diagnostic groups, varying communication abilities, and with people with moderate to severe intellectual disabilities. [ABSTRACT FROM AUTHOR]

Introduction: There is growing recognition that healthcare inequalities faced by people with intellectual disabilities extend to their experiences at the end of life, resulting in calls for more inclusive research to help address these inequities. Our study aimed to address this through the co‐design of a toolkit for supporting end‐of‐life care planning with people with intellectual disabilities. To inform the co‐design process, we undertook an evidence review to identify existing tools, resources and approaches that were already being used in practice. Methods: Our evidence review comprised three components: (i) a rapid scoping review of the academic literature, (ii) a desk‐based search of the grey literature and (iii) an online survey to capture unpublished resources that were distributed to services, professionals, third‐sector organisations and family members. A longlist of existing materials was appraised using an adapted version of the AGREE II instrument, resulting in a shortlist that was shared with the co‐design team. Results: The evidence review played a critical role in the co‐design of a new toolkit of end‐of‐life care resources for people with intellectual disabilities. However, AGREE II proved to be limited for our purposes. Conclusions: The survey was particularly useful in helping us identify resources, tools and approaches in current use. We identified evidence review processes that served to support co‐design team activities and elements that were more problematic. We argue that evidence review practices might be enhanced to better aid co‐design activities in health and care research, particularly for studies involving people with intellectual disabilities. Patient or Public Contribution: This article reflects on an evidence review that was conducted as part of The Victoria and Stuart Project. People with intellectual disabilities were deeply involved at every stage of project design, delivery and dissemination. The project employed people with intellectual disabilities as members of the core research team. People with intellectual disabilities and family carers were members of the project co‐design team and the project Advisory Group. The evidence review process itself was led by academic members of the research team with contributions from colleagues with intellectual disabilities via the Advisory Group and core research team. The findings from the evidence review were used by the co‐design team to inform the development of an end‐of‐life care planning toolkit for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

The present study aims to test a model in which basic psychological needs (BPN) satisfaction in physical‐sport activity contexts is associated with self‐determined motivation, which, in turn, would predict the social inclusion of people with intellectual disabilities. A total of 286 people with intellectual disabilities (53.5% men) who reported engaging in physical‐sport activities responded to a validated questionnaire about the satisfaction of their BPN, motivation (using the Self‐determination index [SDI]), and social inclusion. A Pearson's bivariate correlation and structural equation modeling were conducted. The resulting model was reanalyzed in a multigroup analysis to test its invariance across self and proxy reports. Positive associations were found between the satisfaction of the BPN and the SDI. However, the SDI and social inclusion were positively associated only in proxy reports (βself = 0.07 vs. βproxy = 0.30). The tested model established positive relationships between the BPN and SDI in autonomy (βself = 0.21 vs. βproxy = 0.18), competence (βself = 0.47 vs. βproxy = 0.53), and relatedness (βself = 0.21 vs. βproxy = 0.23). Further research is needed to understand the factors leading to discrepancies between participants and proxies when relating the SDI to social inclusion in the context of physical‐sport activity. However, the results obtained suggest that it would be optimal to develop contexts of practice for people with intellectual disabilities in which the satisfaction of their BPN is favored and that this has a positive impact on their motivation and social inclusion. Highlights: In the context of physical‐sport activity practice, the satisfaction of basic psychological needs in people with intellectual disabilities seems to be associated with developing more self‐determined motivation, with a strong association found between competence satisfaction and self‐determined motivation.Self‐determination index appears to have a positive relationship with the social inclusion of people with intellectual disabilities in physical‐sport activity contexts.Discrepancies have been found between the perceptions of people with intellectual disabilities and proxies regarding the terms of this relationship, necessitating research to understand better the factors that may be generating such discrepancies. [ABSTRACT FROM AUTHOR]

Introduction: Support staff within social care settings have expressed a need for resources to facilitate end‐of‐life care planning with people with intellectual disabilities. This study aimed to co‐design a preliminary toolkit of end‐of‐life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. Methods: An adapted Experience‐Based Co‐Design process was applied to develop a toolkit for end‐of‐life care planning with people with intellectual disabilities. A co‐design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co‐facilitated the workshops), five family members, five intellectual disability support staff including two intellectual disability service managers, and five healthcare professionals. Results: The All Together Group tested resources for and approaches to end‐of‐life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy‐read end‐of‐life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation‐starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end‐of‐life care planning with people with intellectual disabilities. Conclusion: Through an iterative, flexible, inclusive, and comprehensive co‐design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end‐of‐life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. Patient or Public Contribution: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.‐B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co‐design group as well. Two of these representatives were also co‐applicants in the overall project (N.P. and S.S.). The co‐design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers. Practitioner Points: To facilitate proper and timely end‐of‐life care planning, resources and approaches should be developed together with people with intellectual disabilities and support staff to make sure they are relevant, accessible, and workable in social care practice.People with intellectual disabilities prefer visual and creative approaches to end‐of‐life care planning rather than easy‐read plans and forms.Co‐producing an end‐of‐life care planning toolkit is an iterative, time‐consuming, and complex process, which requires a flexible approach, adapting to the feedback from and needs of co‐design group members. [ABSTRACT FROM AUTHOR]

Background: Previous research has shown that people with intellectual disabilities have limited sexual knowledge, which can be essential for developing positive sexuality. This study aimed to check the validity and reliability of an assessment tool (SexKunn) for measuring the sexual knowledge of people with intellectual disabilities in Norway. Further, we aimed to identify potential knowledge gaps among the participants and highlight their potential impact Methods: 37 people with intellectual disabilities completed one assessment. 20 participants then completed a retest. Clinicians' (n=23) views on the assessment tool were measured to obtain face validity. Positive and negative agreement analysis was used to identify potential dimensions in the data. Results: A weighted Cohen's kappa for the test and retest of the overall scores was considered to be substantial. The clinicians described an acceptable face validity regarding high positive value scores and low negative burden scores. They also suggested improvements. The study identified that the participants lacked knowledge about female genitals, hygiene, appropriate touching/sexual acts with friends/intimate partners, and contraception. Conclusions: The SexKunn is a feasible assessment tool to measure sexual knowledge in people with intellectual disabilities. A lack of sexual knowledge of people with intellectual disabilities may violate their sexual rights. [ABSTRACT FROM AUTHOR]

Data from the World Health Organization indicate that the unemployment rate for people with disabilities can reach 80% in some countries. In Western societies, employment for people with physical or sensory disabilities is settled through inclusive practices in ordinary settings, according to the interests of the person. In the case of people with intellectual and developmental disabilities, it is frequently developed through segregating and not very emancipatory practices, which severely restricts professional development options. This article develops the state of the art regarding research on the professional development of people with intellectual and developmental disabilities. The different studies are classified according to the six main models of professional development, where trends and main contributions are observed. Results show a low number of investigations, with a predominance of the sociocognitive approach, which is focused on self-efficacy. The conclusion highlights the need to investigate from an emancipatory perspective, which contributes to overcoming the barriers and promotes practices that advance towards social justice and equity for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

In the Kabbalah creation myth, God creates the universe by "stepping back", releasing ten holy vessels with his light—only to have those vessels shatter with shards of divine light, or "shards" scattered throughout the earth. In a parallel approach, this paper suggests that the sacred must be sought in diverse encounters within everyday life and professional practice. In counseling or other therapeutic support, the definition of and search for spiritual dimensions must be broadened to thoughtfully incorporate the diverse experiences and expressions of people with intellectual disabilities. Similarly, those who seek to understand people's relationship with the divine and support meaning in their lives must welcome a wide range of "artistic" engagements, an approach exemplified in grief and loss intervention. This article concludes by pointing towards resonance as a helpful concept to reconceptualize accessible spirituality in future work. [ABSTRACT FROM AUTHOR]

Background: The impact of the COVID-19 on the well-being of people with intellectual disabilities (PID) has been little studied. Methods: We analyzed its impact with a cohort study quantitatively analyzing anxiety, depression, organic symptoms, quality of life, and support needs in 24 PID, aged 19–74 years (x¯ 40, σ = 13.09), living in a residential center, before, during, and after the pandemic. Results: Their mental health improved unexpectedly at the onset of the lockdown although there was an increase in organic symptoms. But, with the progress of the lockdown, their mental health deteriorated drastically. On the contrary, as expected, their quality of life and support needs worsened from the beginning of the lockdown until the country returned to normality, a time when there was a general recovery, without reaching pre-pandemic levels. These results show that the mental health of PID was affected differently to that of people without intellectual disabilities.

Background: Participation is often defined as taking part and being included in different areas of life. Leisure represents an important area of life for all people. People with disabilities have the right to experience leisure time in a self-determined manner. They have the right to participate in leisure activities on an equal basis with others. Due to various influencing factors, people with intellectual disabilities, especially those with severe to profound intellectual disabilities, are at risk of decreased participation. This is alarming because participation in leisure activities reflects quality of life. Purpose: The present study aims to review the empirical findings on leisure participation and its influencing factors in people with mild to moderate disabilities as compared to people with severe to profound intellectual disabilities. Method: A scoping review following the PRISMA-ScR checklist by Cochrane and the Joanna Briggs Institute (JBI) was conducted to examine research studies published in peer-reviewed journals between 2000 and 2022. The studies that were included relate to activities within the everyday leisure time of people with intellectual disabilities, regardless of age, gender, or severity of their cognitive disability. The categories of vacation and tourism were excluded so as to focus on everyday leisure. The sample was screened by two reviewers independently. In total, 27 articles met the inclusion criteria, with 21 articles referring to people with a mild to moderate intellectual disability and only six articles referring to people with a severe to profound intellectual disability. The evidence was summarized with a predefined standardized charting form, which was used by the two reviewers. Results: The results show that participation in leisure activities by people with intellectual disabilities can be limited, especially for those with severe to profound intellectual disabilities. This contradicts the guiding principle and human rights of inclusion and self-determination. Their participation in leisure time is extremely dependent on external factors, such as support people, leisure time availability, and form of living. Passive activities at home are often provided for people with severe to profound intellectual disabilities in particular; therefore, the need for interactive and self-determined leisure opportunities in the community is enormous. Various factors influencing leisure participation can be identified. Implications: The findings of this scoping review can be used to consider intervention, support, and barriers to enhancing leisure participation among people with disabilities as an important area of life.

Down syndrome is considered the most common genetic cause of intellectual disability. People with intellectual disabilities have deficits in intellectual functioning such as attention, reasoning and academic learning. According to the American Association on Intellectual and Developmental Disabilities and the Centers for Disease Control and Prevention, intellectual disability encompasses only a person's intellectual functioning; however, it can co-exist with other developmental disabilities, such as Down syndrome. People with Down syndrome may have intellectual disabilities in the mild to moderate range. Because of this, they exhibit some cognitive and emotional characteristics of intellectual disability. Among the emotional characteristics of these populations are difficulties in recognizing some emotions, which triggers anxiety and depression problems. The literature proposes using serious video games to support different skills of people with Down syndrome and intellectual disabilities. Some of these works have shown how these serious video games support the development of different skills of these populations. However, they have not been designed to support their emotional awareness. Likewise, technology is aimed at supporting emotion recognition and identification, but most of these have been aimed at other populations, such as people with autism. This paper presents the evaluation process of the design of Emotion4Down: a serious video game to support emotional awareness. We conducted this evaluation in three stages involving people with intellectual disabilities and Down syndrome. [ABSTRACT FROM AUTHOR]

Caregivers of people with intellectual disabilities may feel overburdened in their work and experience negative psychological consequences. The purpose of this instrumental study was to determine the evidence of internal structure and reliability of the Zarit Caregiver Burden Interview scale. A total of 398 family caregivers, including women and men, participated (M = 47.33, SD = 10.44). The structure of the scale was evaluated by factor analysis and the McDonald Omega coefficient was used to estimate reliability. Sixteen models of the scale were tested, differing in number of items and factor structures. A model of 15 items and 4 dimensions (overload, competence, social relationship, and interpersonal relationship) obtained acceptable fit (χ2 = 184.72; p < 0.001; CFI = 0.95; TLI = 0.94; RMSEA = 0.055; SRMR = 0.05) and reliability coefficients above 0.70 in their dimensions. It is concluded that the Zarit scale is valid and reliable for use in caregivers of people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

COVID-19 pandemic is a public health issue. From 2019 to 2022, 4.5 million people died from the COVID-19 epidemic. Consequently, COVID-19 has put a significant strain on every single creature in this world. COVID-19 has been associated with lockdown, thus resulting in lockdown related inequities towards most people in this world, with unanticipated consequences for people with disabilities. Building in this debate, this paper aimed to discuss on the impacts of COVID-19 on the physical health of People with Intellectual Disabilities. Based on the Prisma protocol, this systematic literature review examined 28 publications from Web Sources of Science and Scopus.The study identified three themes regarding the impact of COVID-19 on the physical environment of people with intellectual disabilities namely mental health, social isolation, severe health problems, socioeconomic and psychology. This study has significant implications in understanding how PWID are impacted by COVID 19 and urged that early preventative measures should be taken since People with Intellectual Disabilities are considered a vulnerable population, therefore it is crucial to ensure that their health status are sustained. [ABSTRACT FROM AUTHOR]

Background: Generic mental health staff often have contact with people with intellectual disabilities when they access mainstream mental health services. To date, there has not been any research conducted in nonwestern countries to explore their views. This paper investigates the views and experiences of mainstream mental health professionals regarding the mental health services for people with intellectual disabilities in Singapore. Methods: Eight staff members from generic mental health services were interviewed. Thematic analysis was used to identify main themes. Findings: The main themes are related to their work experiences, perceptions of people with intellectual disabilities, ideal staff characteristics and service recommendations. Conclusions: Participants identified a lack of experience and knowledge when working with this population. They highlighted the challenges they face promoting choice and autonomy for people with intellectual disabilities. The discussion includes recommendations for improving staff knowledge through training opportunities, consideration of non-pharmacological approaches and early collaboration with caregivers during the treatment process.

This study examines perceptions and understandings of self-determination in the context of relationships between people with intellectual disabilities and social care professionals. We held focus group discussions to explore the views and experiences of 10 residents and 10 professionals at three facilities for people with intellectual disabilities located in Western Switzerland. Participants perceived and understood self-determination in terms of decision-making, social skills, procedures, identity, self-consciousness, autonomy, freedom, barriers, and facilitators. The research process highlighted the shifting and situational nature of the concept, as well as the importance of self-determination for people with intellectual disabilities. The findings also highlight the importance of discussion and reflection on the concept of self-determination and its benefits for people with intellectual disabilities.

Support organised through a personal budget aims to promote people’s choices in how they arrange their support. Participation in choices of people who use little or no verbal speech to express themselves requires that support workers use personalised communication. This article explores how support workers use personalised communication to prioritise the choices of people with intellectual disabilities about organising support through a personal budget. It applies Gormley and Fager’s framework of dimensions for personalising communication to analyse ethnographic data from four people with intellectual disabilities using personal budgets and their support workers. The analysis found that workers promoted people’s participation in choices about their support when they focused on how people preferred to express themselves. Support practice, policy and research that target people’s communication preferences in making support arrangements can have direct impact on their satisfaction with the arrangements and the quality of their personalised support.

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