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Background: The right of people with disability to be self-determining, to live a life of their choosing, is increasingly recognized and promoted. For adults with intellectual disability, support to enable self-determination may be required. This is often provided by family, yet little is understood about the experience of providing such support., Methods: An interpretative phenomenological analysis (IPA) of eight individual, semi-structured interviews with mothers was conducted, to understand the meaning given to their experience of supporting self-determination of their adult son or daughter with intellectual disability., Results: Three superordinate themes were identified: (a) support context; (b) continuum of support roles; and (c) mother's personal concerns., Conclusion: Mothers of adults with intellectual disability experience an ongoing sense of responsibility to balance competing rights and concerns as they support self-determination. This complex, interdependent relationship results in roles that may facilitate, guide, influence and at times restrict choice and control., (© 2019 John Wiley & Sons Ltd.)

Background: In recent years, increased attention has been directed towards the importance of identifying the future goals of people with intellectual disability (ID) and promoting their abilities to design their future. Consistent with these, the first aim of this study is to investigate the future goals of people with ID in terms of content and temporal distance. Moreover, the second aim of this study is to test the predictive role of self-determination on the number of future goals reported by people with ID., Methods: In this study, 96 young adults with ID were involved and a mixed method design was chosen. Specifically, qualitative procedures (consensual qualitative analyses) and quantitative procedures (structural equation modelling) were carried out., Results: The results showed that the future goals of people with ID are characterised by different factors related to autonomy, health/well-being, interpersonal relations and personal growth. Moreover, self-determination (assessed with Self-Determination Questionnaire-Version for Adults) predicts a higher number of future goals reported by people with ID., Conclusions: These results suggest the importance of providing adequate support to the development of self-determination., (© 2019 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Purpose:  Examining everyday challenges in the interactions between people with intellectual disabilities and their staff, as seen from the user's perspective, is an important perspective in health care research. Involving people with intellectual disabilities as so-called co-researchers is a relatively unexplored research strategy. In this paper, co-researchers participated in all the steps of the research process, from planning to reporting, in addition to the written reporting of the findings. The aim of this study was to explore how people with intellectual disabilities experienced a filmed vignette of an everyday situation. Method: Based on audio-recorded and transcribed individual and focus-group interviews with people with intellectual disabilities, performed by co-researchers with intellectual disabilities together with researchers, qualitative content analysis was used. Results: The analysis reveals three themes: "being emotionally touched", "being aware of the other", and "being unclear". Conclusions: The results are discussed in light of normalization and participation in society with independence and one's own decision-making. Regarding the care of people with intellectual disabilities, the main finding is the need to focus not only on greater involvement of this population in their own daily lives, but also to teach self-determination skills. Another finding is the importance of involving people with intellectual impairment as co-researchers.

The tenets of self-determination theory as applied to support were tested with structural equation modelling for 186 people with ID with a mild to borderline level of functioning. The results showed that (a) perceived autonomy support was positively associated with autonomous motivation and with satisfaction of need for autonomy, relatedness, and competence; (b) autonomous motivation and need satisfaction were associated with higher psychological well-being; (c) autonomous motivation and need satisfaction statistically mediated the association between autonomy support and well-being; and (d) satisfaction of need for autonomy and relatedness was negatively associated with controlled motivation, whereas satisfaction of need for relatedness was positively associated with autonomous motivation. The self-determination theory provides insights relevant for improving support for people with intellectual disability.

Research focusing on online identity and the personal experiences of adults with intellectual disabilities (ID) is currently limited. Eleven adults with ID were interviewed regarding personal experiences of being online and using social media. Data were analyzed qualitatively using thematic network analysis. Two global themes, online relatedness and sharing and online agency and support, highlighted the positive potential of social media in enabling the development and maintenance of social bonds, valued social roles, and feelings of enjoyment, competence, autonomy, and self-worth. Participants reported sharing various expressed online identities that did not focus on or hide impairment, challenging notions of dependency, with participants both providing support and being supported online.

The relation between self-determination and intellectual functioning is complex, as other contextual factors may also play significant roles in explaining variability in self-determination. This study used meta-analytic techniques to assess how self-determination measures vary between people with disabilities classified as having intellectual disability (ID) or not, and contextual variables that moderate this relation. The literature search yielded 16 eligible studies, whose variables of interest were coded and analyzed. The results showed that when comparing self-determination measures among disability classification groups, gender, disability label and race/ethnicity were associated with the effect size estimation. These findings empirically support the relevance of personal variables when understanding self-determination levels and their impact in the operational classification of ID.

Background: The benefits of autonomy support with the general population have been demonstrated numerous times. However, little research has been conducted to verify if these benefits apply to people with special needs., Methods: The goal of the study was to examine whether autonomy support (AS) can foster the sense of autonomy of people with a mild intellectual disabilities (MIDs) and improve their experience while engaging in an important but unpleasant learning activity. This experiment compares the effects of two contexts: with and without AS. All participants (N = 51) had a mild intellectual disability and were recruited from rehabilitation centres., Results: Compared to participants in the control group, participants in the AS group tended to experience greater autonomy satisfaction and tended to perceive more value to the activity. They were also significantly more engaged in it, and they experienced a steeper decrease in anxiety over time., Conclusions: This study suggests that the benefits of AS extend to individuals with mild intellectual disability., (© 2016 John Wiley & Sons Ltd.)

Background: Practices to facilitate self-determination have not received appropriate attention in research concerning parents with intellectual disabilities (ID). Likewise, parenting interventions for adults with intellectual disabilities have seldom observed both parent and child behavioural outcomes., Methods: This study evaluated the effectiveness of a parenting intervention embedded with self-determination facilitation practices for two dyads of a parent with intellectual disabilities and their young child. The interventions focused on increasing parents' ability to correctly implement steps of a parenting routine while reducing occurrence of challenging child behaviour., Results: The results of the study demonstrated two basic effects of correctly completed steps of the parenting routine and a reduction of challenging child behaviour. Parents also reported decreased feelings of stress during the routine following completion of the intervention., Conclusions: Implications for future research and replication of this pilot study are discussed., (© 2016 John Wiley & Sons Ltd.)

This article discusses autonomy in the lives of adults with intellectual disabilities. The article draws on inclusive research in Iceland with 25 women and 16 men and employs ideas of relational autonomy from the perspectives of the Nordic relational approach to disability. In this article, we examine autonomy in relation to private life, that is, homes and daily activities. The article demonstrates how practices have improved with time and seem less paternalistic. However, the article also demonstrates that the assistance people with intellectual disabilities receive in their homes often has institutional qualities, and they are often met with belittling perspectives from staff and family members. Furthermore, many did not have access to important information needed to develop individual autonomy and independence, including making their own choices. The research findings suggest that people with intellectual disabilities can with appropriate support develop individual autonomy and make their own choices., (© The Author(s) 2014.)

Background: Quality of life for people with intellectual disabilities has been reported in the research literature across differing demographics. There has been, however, little research that has examined in-depth the experiences of women with intellectual disabilities aged 40 years or older., Materials and Methods: Fifty-five women from Sydney, Australia, and Prague, Czech Republic, were recruited to the study. Participants were recruited through agencies known to the researchers, ensuring ethical conduct of all procedures., Results: Each participant completed a semi-structured interview, and using a grounded theory approach, a series of themes were identified common across all women. The strongest theme identified throughout the interviews was the lack of control participants perceived they had over their lives., Conclusions: The results of this study further the call for people with intellectual disabilities to be provided the opportunity to participate in decisions about their life choices., (© 2011 Blackwell Publishing Ltd.)

Background: In the UK those paid to support adults with intellectual disabilities must manage two potentially conflicting duties that are set out in policy documents as being vital to their role: protecting service users (their duty of care) and recognising service users' autonomy. This study focuses specifically on the support of people with the genetically determined condition, Prader-Willi syndrome (PWS). Due to the behaviours associated with PWS, the support of this group of people vividly illustrates the tension between respect for autonomy and duty of care. This article explores how support workers working in a residential group home managed their competing duties of managing risk and promoting independence in practice., Methods: An ethnographic study, comprising of qualitative observations, semi-structured interviews and documentary analysis, was undertaken to investigate the work of support workers in a UK residential group home specialising in the support of adults diagnosed with PWS. The study focused on how support workers attempted to reconcile the tension between protecting service users from the risks associated with the syndrome and acknowledging service users' autonomy by enabling independence., Results: Findings demonstrate that risk was central to the structure of care delivery at the group home and support workers often adhered to standardised risk management procedures. The organisation also required support workers to promote service users' independence and many thought acknowledging service users' autonomy through the promotion of their independence was important. To manage tensions between their differing duties, some support workers deviated from standardised risk management procedures to allow service users a degree of independence., Conclusions: There is a tension between the duty of care and the duty to recognise autonomy at the level of service delivery in residential homes. Support workers attempt to manage this tension; however, further work needs to be done by both residential services and policy makers to facilitate the reconciliation of the duty of care with the duty to recognise service users' autonomy in practice., (© 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.)

We asked teachers and parents to assess the self-determination prospects of 135 youth with severe intellectual and developmental disabilities. Teachers typically reported that youth evidenced limited knowledge about self-determined behavior, ability to perform these behaviors, and confidence regarding the efficacy of their self-determination efforts. Parents and teachers diverged in their evaluations of the self-determination capacities of youth but agreed that opportunities to engage in self-determined behavior were available both at school and home. Although social skill and problem behavior ratings both were significant predictors of teachers' ratings of students' self-determination capacity, opportunities at school, opportunities at home, and problem behaviors were negatively correlated with ratings of students' self-determination capacities and opportunities.

Large-scale reviews of research in deinstitutionalization and community living were last conducted about 10 years ago. Here we surveyed research from 1997 to 2007. Articles were included if the researchers based the study on original research, provided information on the participants and methodology, compared residential arrangements for adults with intellectual disability, and were published in English-language peer-reviewed journals. Sixty-eight articles were found. In 7 of 10 domains, the majority of studies show that community-based services are superior to congregate arrangements. These studies provide more evidence of the benefits of deinstitutionalization and community living and continue to indicate variability in results, suggesting that factors other than the basic model of care are important in determining outcomes.

The aim of this study was to describe how people with developmental disabilities experienced the use of time aids one year after their introduction by an occupational therapist. Data were obtained through semi-structured interviews. The analysis was performed using a phenomenographic qualitative approach. The results showed that independence and autonomy should be considered as two separate phenomena. Increased independence did not always lead to increased autonomy or vice versa. Four different relationships between these two phenomena were found. They all illustrate the different priorities of the participants and different levels of independence and autonomy. Concerning the usability of time aids, the occupational therapist has to recognize the importance of having frequent communication with the client to understand the phenomena that may affect the use of the aids. The occupational therapist should always try to involve both the client and significant support persons while introducing time aids. Future research in time aids with clients with developmental disabilities could involve multiple interviews with participants combined with participant observations and interviews.

A chapter from his forthcoming book "Deciding for the Profoundly Mentally Disabled," Professor Norman Cantor argues persuasively for the right of incompetent persons to have a surrogate make critical medical decisions on their behalf, particularly in the context of refusing life-sustaining treatment. While abusive surrogate decision-making is always a concern, Professor Cantor recommends both substantive and procedural protections in order to preserve intrinsic human dignity for the profoundly disabled.

The present article gives inside in research work in progress. Habermas (1973) pointed out the interdependency of economical motivational and other personal interests and the scientific results in research. Starting research on (sexual) self determination in institutions for mentally retarded people we were confronted with quite a number of conflicts of interests. The present article tries to clarify these conflicts from different perspectives e.g. the perspective of the management of the institutions, the perspective of the concerned inhabitants and the perspective of the caregivers. Describing the areas and hindrances we try to find out what sort of fascilitators are needed to improve the participation of mentally handicapped persons in this research process. From a methodological point of view we chose a qualitative approach to generate prototypes and controlled this approach by an expert committee. One of the main results is that a policy against sexual abuse in these institutions has to be part of the general quality discussion.

This report is based upon a model project financially assisted by a grant from the German Federal Ministry for Families, Senior Citizens, Women and Youth, starting in 1999 and ending at the end of 2003. In cooperation with two disability care residential institutions, a conceptual approach and method to the questions of sexual self-determination and sexualized violence is being developed. Through qualitative methods of research e.g. focus groups, professional helpers of all hierarchies of the institution, including management, and the residents themselves, all had the chance to contribute their own opinions and experiences to the research topic. Specifically, to ensure their voice was heard, the people with mental retardation had an important impact on the questionnaire themselves. All aspects of sexuality were discussed--with notable difficulty arising in particular over the subject of sexual violence. It turned out that nonverbal communication and the interaction between the group members in the residents group were most indicative of their concerns. The staff at the nursing and living areas discussed the following topics: distance and closeness in the interaction between staff and residents, standards, reflections of their own professional attitudes, questions of legality as well as the tense topic of individual needs and tasks of the group. How those questioned described their solutions and ways of coping, and the impressions of the researchers forms the starting point for the compiled work. The initial ideas for the topics and the design of the concept are now laid out.

The author describes the development in German law regarding the protection of sexual self-determination of disabled persons. Her analysis encompasses the last twenty years, starting from the "cripple-tribunal 1981", where disabled women first raised the subject in German public. As the main legal reforms for disabled persons in Germany, the author analysis the Thirty-First-Criminal-Law-Change-Act and the Sixth-Act-To-Reform-Criminal-Law of 1997/98 as well as the Ninth-Social-Law-Code of 2001. The author welcomes these legislative reforms but points to the fact that the judiciary has yet failed to implement particularly the criminal law reform. In addition she shows that the new criminal law does not fill all former protection gaps. She demands further reforms in other areas of law. Finally she emphasizes that comprehensive information and education for all those who are concerned by the subject are necessary.

In recent years, the self-determination construct has received increased international visibility and utilization in the field of intellectual disability (ID). This has resulted in efforts to promote skills enhancing self-determination, and in efforts to change how adult services are funded to allocate resources to increase consumer control and direction. An important component to consider in both of these efforts is the role of the environment on self-determination. The present study examined the self-determination, autonomy and life choices of individuals with ID before and after they moved from a more restrictive work or living environment. The self-determination of adults with ID was measured for an average 6-months before and after a move from a more restrictive living or working environment to a community-based setting. Paired-sample t-tests indicated that there were significant changes, in each case in a more adaptive direction, in self-determination, autonomous functioning and life choices following a move to a less restrictive environment. The present findings contribute to emerging evidence that the self-determination of individuals with ID is limited by congregate living or work settings which limit opportunities for choice and decision-making. Alternatively, more normalized, community-based environments support and enhance self-determination. Because self-determination has been linked to positive adult outcomes and enhanced quality of life, it is important to consider ways to enable people with ID to live and work in their communities.