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The Psychiatric Assessment Schedule for Adult with Developmental Disability (PAS-ADD) is an international reference tool for the diagnosis and assessment of mental health problems and behavioural disorders among people with intellectual disabilities. Although the original PAS-ADD instrument has been validated in the Spanish language, the shorter PAS-ADD Checklist has yet not been validated. The aim of this study is to validate the PAS-ADD Checklist for the Spanish population.The PAS-ADD Checklist Questionnaire was administered to 208 adults with intellectual disabilities at a vocational centre in Madrid, Spain. The psychometric analyses included internal consistency, inter-rater and test-retest reliability, Varimax rotation factor analysis for construct validity, criterion validity and feasibility.The Cronbach's alpha was 0.80 for the overall questionnaire and between 0.40 and 0.79 for the subscales. The Kappa coefficients for test-retest and inter-rater reliability were between 0.66 and 0.80. Varimax rotation factor analysis showed five well-defined factors. The Kappa coefficients for criterion validity were between 0.30 and 0.70. Feasibility was also good.The PAS-ADD Checklist is a feasible and reliable instrument for carrying out initial assessment of the mental health status of adults with intellectual disabilities, referring cases to more specialised diagnosis and treatment.

The demand for (care) services for people with intellectual disabilities (ID) is on the rise, because of an expanding population of people with ID as resources are concurrently diminishing. As a result, service providers are increasingly turning to technology as a potential answer to this problem. However, the use and application of surveillance technology (ST) in the care for people with ID provokes conflicting reactions among ethicists and healthcare professionals, and no ethical consensus has been reached as of yet. The aim of this study was thus to provide an overview of how ST is viewed by (care) professionals and ethicists working in the field by investigating what the ideal application of ST in the residential care for people with ID might entail.Use was made of the concept mapping method as developed by Trochim; a computer-assisted procedure consisting of five subsequent steps: brainstorming, prioritising, clustering, processing by the computer and finally analysis. Various participants (ranging from ethicists, physicians to support workers) were invited on the basis of their intended (professional) background. Prior to this study, the views of care professionals on the (ideal) application of ST in the residential care of people with dementia have been consulted and analysed using concept mapping. A comparison between the two studies has been made.Results show that the generated views represent six categories, varying from it being beneficial to the client; reducing restraints and it being based on a clear vision to (the need for) staff to be equipped; user friendliness and attending to the client. The results are presented in the form of a graphic chart. Both studies have produced very similar results, but there are some differences, as there appears to be more fear for ST among care professionals in the care for people with ID and views are expressed from a more developmental perspective rather than a person-centred perspective with regard to people with dementia.When it comes to views on using technology both in dementia care and the care for people with ID, there appears to be an inherent duality, often rooted in the moral conflict between safety versus freedom or autonomy. What is more, elaboration on abstract concepts often presumed to be self-evident, whether ethical or not, has proven to be difficult. How ST is viewed and apprehended is not so much dependent of the care setting and care needs, but rather whether it is clear to everyone affected by ST, what one wants to achieve with ST.

Health checks for people with intellectual disabilities (ID) have been recommended as one component of health policy responses to the poorer health of people with ID. This review summarises evidence on the impact of health checks on the health and well-being of people with ID.Electronic literature searches and email contacts were used to identify literature relevant to the impact of health checks for people with ID.A total of 38 publications were identified. These involved checking the health of over 5000 people with ID from a range of countries including a full range of people with ID. Health checks consistently led to detection of unmet health needs and targeted actions to address health needs.Health checks are effective in identifying previously unrecognised health needs, including life-threatening conditions. Future research should consider strategies for optimising the cost-effectiveness or efficiency of health checks.

As people with intellectual disabilities (ID) today live integrated in society and use different technological artefacts and services in their everyday life, more in-depth evaluation methods are crucial to detect strengths and limitations of their everyday technology use. The Everyday Technology Use Questionnaire (ETUQ) was originally designed to investigate the extent to which older adults with cognitive limitations can use the everyday technology that is of relevance to them. The purpose of this study was to explore and evaluate evidence of the validity of ETUQ among adult persons with ID.The original 93-item ETUQ was used to interview 120 adult participants with ID, recruited from a region in northern Sweden. A Rasch model was used to analyse the psychometric properties of the rating scale, scale validity, person response validity and person separation.The ETUQ rating scale displayed sound psychometric properties when used with this sample. The goodness-of-fit statistics showed that 15 (16%) of the 93 items demonstrated higher values than expected. A step-by-step removal process of items not demonstrating fit to the model resulted in an ETUQ version with 46 items (49%) that met all the criteria for scale validity. Fifteen participants (12%), primarily with mild ID, still demonstrated a higher number of unexpected responses included in ETUQ.The results of this study indicate that the ETUQ generates a valid measure of perceived difficulty in using everyday technology including adult persons with ID.

Executive functioning (EF) is an important concept in cognitive psychology that has rarely been studied in people with intellectual disabilities (IDs). The aim of this study was to examine the validity of two test batteries and the structure of EF in this client group.We administered the children's version of the Behavioural Assessment of the Dysexecutive Syndrome (BADS-C) and the Cambridge Executive Functioning Assessment (CEFA) for people with ID, to 40 participants who attended day centres for people with mild to moderate learning disabilities [mean full-scale intelligence quotient (IQ) = 59]. The BADS-C consists of six EF subtests while the CEFA contains eight EF (including two executive memory) subtests and four memory subtests. IQ and receptive language ability were also assessed. The results were subjected to principal components analysis, and regression analysis was used to examine the relationship of the ensuing factors to other cognitive variables.Scores on both sets of EF tests were only weakly related to receptive language ability, and even more weakly related to IQ. Scores on the BADS-C were substantially lower than predicted from the published norms for people in higher IQ ranges, and many participants scored zero on three of the six subtests. This potential floor effect was less evident with scores on the CEFA. Principal components analyses produced one usable factor for the BADS-C, and two factors for the CEFA that differed in both the extent of involvement of working memory and the predominant sensory modality. A combined analysis of the subtests retained from both analyses produced three factors that related uniquely to aspects of IQ and memory.The CEFA is suitable for use with people with mild to moderate learning disabilities, whereas the BADS-C is at the lower limit of usability with this client group. The lower-than-expected scores observed on the BADS-C may indicate that people known to learning disability services may be more impaired than people of comparable IQ not known to services. The structure of EF seen in people with IDs closely resembles a model of EF in the general population that has received a broad level of support.

While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs.A retrospective study of medical files of people who died between January 2002 and July 2007.One or more end-of-life decisions were taken in 27 out of 47 cases. A non-treatment decision was taken for seven residents, possibly shortening life expectancy in some cases. The family was involved in decision making in half of the 27 cases. No information was found about the process of end-of-life decision making. There was no evidence in the notes that any of the people with IDs was asked for his or her own opinion in taking an end-of-life decision.This study demonstrates that medical end-of-life decisions played a part in significant numbers of people with IDs who have died within this centre, but further studies are needed to establish decision-making processes.

Research suggests that persons with intellectual disabilities (ID) are expected to be more compliant than persons without disabilities and that expectations for compliance begin in childhood. No study, however, seems yet to have included a primary focus on the participatory rights, or rights to express opinions, desires and preferences and to be heard and taken seriously in decision making among young people with ID who are not yet considered legally adult. The purpose of the two current studies was to explore how the right to participation is negotiated for young people with ID in a family context and to determine family members' recommendations for strategies to facilitate the participation of young people with ID.In the first study, four young people with ID, their mothers and two siblings from four families took part in semi-structured interviews about decision making in the family context. In the second study, a mother and daughter from the first study discussed and developed strategies to promote participation for young people with ID.In the first study, all participants communicated that young people with ID follow an age-typical yet restricted pattern of participation in decisions about their lives. Young people's participation was consistently framed by familial norms and values as well as their families' desire to protect them. In the second study, both participants suggested communication about the outcomes of real or imagined decisions would help young family members rehearse decision-making strategies that would facilitate their autonomy while remaining within the bounds of familial norms, values and perceptions of safety.Although young people with ID may make fewer independent decisions about their lives than typically developing peers, support in decision making can enable both increased protection and independence.

Background People with intellectual disabilities (IDs) whose behaviour challenges services are at increased risk of placement breakdown. Most previous research has tended to focus on the role of individual characteristics in predicting breakdown. A small number of studies have suggested that service variables may impact on intervention effectiveness and hence placement breakdown. Method This study used a non-experimental group comparison design to investigate potential differences between two groups of residential homes, one of which had experienced placement breakdown, and one of which had successfully maintained placements in the community. Results More residents in the breakdown group had inappropriate sexual behaviours but there were no other differences. Services in the breakdown group had more limited procedural guidance for staff, weaker training, supervision and team meetings and less external professional support. Conclusion Placement characteristics may be an important determinant of community placement success for people with IDs and challenging behaviour. Those selecting and funding residential placements for such people should attend to the technical competence of the placement (in terms of its use of procedural guidance, training and professional advice) and to the extent of support for staff (in terms of training, supervision and team meetings).

Background Five factors are proposed as important in influencing the provision of psychological therapy to people with intellectual disabilities (IDs): the perceived effectiveness of psychological therapy, individual clinician competence, service resources (number of trained clinicians), the level of the client’s disability and the diagnostic overshadowing bias. Method A prospective questionnaire design was used. A survey style questionnaire was sent out to clinical psychologists ( n =  ) and psychiatrists ( n =  ) working in ID services in the UK. Responses were received from  psychologists and  psychiatrists. Results Perceived competence, the level of the client’s disability and the diagnostic overshadowing bias all appeared to be important factors. The perceived effectiveness of psychological therapy with this client group and service resources appeared less important than hypothesized. Conclusion Whereas the debates in research publications tend to focus on broad issues of effectiveness, clinicians themselves appear more concerned with their personal skill levels. The issue of the appropriateness of psychological therapies for people with more severe levels of disability remains largely unresearched.

The most prevalent type of structural variation in the human genome is represented by copy number variations that can affect transcription levels, sequence, structure and function of genes.In the present study, we used the multiplex ligation-dependent probe amplification (MLPA) technique and quantitative PCR for the detection of copy number variation in 132 intellectually disabled male patients with normal karyotypes and negative fragile-X-testing.Ten of these patients (7.6%) showed copy number variation in the subtelomeric regions, including deletions and duplications.Duplications of the SECTM1 gene, located at 17q25.3, and of the FLJ22115 gene, located at 20p13, could be associated with phenotype alterations. This study highlights the relevance in the aetiology of intellectual disability of subtelomeric rearrangements that can be screened by MLPA and other molecular techniques.

There is a need for validated, standardised tools for the assessment of executive functions in adults with intellectual disabilities (ID). This study examines the validity of a test of planning and problem solving (Tower of London) with adults with ID.Participants completed an adapted version of the Tower of London (ToL) while day-centre staff completed adaptive function (Adaptive Behaviour Scale - Residential and Community: Second Edition, modified version) and dysexecutive function (DEX-Independent Rater) questionnaires for each participant. Correlation analyses of test and questionnaire variables were undertaken.The adapted ToL has a robust structure and shows significant associations with independent living skills, challenging behaviour and behaviours related to dysexecutive function.The adapted ToL is a valid test for use with people with ID. However, there is also a need to develop other ecologically valid tools based on everyday planning tasks undertaken by people with ID.

Attachment research has shown the importance of attachment behaviour for the prevention of dysregulated behaviour due to emotional distress. The support of an attachment figure may be especially important for people with intellectual disability (ID), because they are less adept in dealing with stressful situations on their own. Our purpose was to examine the role of support staff as targets of attachment behaviour for young people with ID by testing the hypothesis that young people who more often engage in attachment interactions with group care staff are less at risk for challenging behaviours. The study design included professional caregivers' report of young persons' attachment behaviour across different relationships to address the relationship-specific nature of attachment behaviour in a group care context.Support staff rated attachment behaviour of 156 young participants with moderate to severe ID who were attending a group care setting. For each participant, we asked two members of the classroom support staff to fill out the Secure Base Safe Haven Observation list. One of them also rated challenging behaviour (Abberant Behavior Checklist).Young people who showed more secure attachment behaviour towards professional caregivers were less irritable, less lethargic and less stereotypic in their behaviour, even if we controlled for developmental age and Autism Spectrum Disorders. Two results point in the direction of relationship-specific attachment behaviour: the absence of high consistency in a person's attachment behaviour towards two different caregivers and the independent contribution of each of these relationships to explaining differences in lethargy and stereotypies. A certain preference in attachment behaviour towards specific caregivers was not associated with challenging behaviour.Findings suggest that attachment behaviour may be part of young persons' adaptation to the stresses and challenges of group care. Furthermore, adaptation may be determined by the integration of relationships with support staff, because each relationship with a care staff member bears uniquely on challenging behaviour.

Background There is a lack of a conceptual framework as to how stress and attribution variables interact and influence staff behaviour in response to challenging behaviour. To address this, a model is tested examining the impact of stress on attributions of challenging behaviour within Weiner's model of helping. Method A total of 107 staff working in community homes for people with intellectual disabilities completed a self-report questionnaire that measured stress, burnout, attributions, emotions, optimism and helping behaviour in response to challenging behaviour. Results Partial support was found for the role of attributions and emotions. However, although staff reported high stress levels and moderate burnout, this did not appear to relate to their reporting of thoughts and feelings regarding challenging behaviour predicted by Weiner's helping model. It was not possible to fully test the helping model, as the ‘help’ variable was not normally distributed. Conclusions There was little evidence to suggest that stress has a primary role in determining staff responses when examined within Weiner's model of helping. Limited support in general was offered for Weiner's helping model. Potential conceptual difficulties and clinical implications are explored and alternative models for future research are discussed.

Background Social stigma and its impact on the life opportunities and emotional well-being of people with intellectual disabilities (IDs) are a subject of both practical and theoretical importance. The disability movement and evolving theories of self, now point to individuals’ ability to develop positive identities and to challenge stigmatizing views and social norms. Method This paper presents findings from a phenomenological study of 10 individuals making the transition from their family home to live more independently and 18 individuals moving from a long-stay hospital to live in community housing. It builds on an earlier data set obtained from people living at home with their families and examines: (1) people's awareness of stigma, and (2) their modes of adaptation to stigma. Results The participants all believed that they faced stigmatized treatment and were aware of the stigma associated with ID. They presented a range of views about self in relation to disability and stigma. These views included regarding themselves as part of a minority group who reject prejudice, and attempts to distance themselves from stigmatizing services and from other individuals with IDs. Conclusions The findings are discussed in relation to theories of self and the importance of considering psychosocial factors is stressed in clinical work with people who have IDs.

Background In England and Wales, if a person is thought to lack capacity to make a decision to undergo a sterilisation operation, a specific process occurs. A Judge sitting in the Family Division of the High Court receives evidence from relevant parties including psychiatric and gynaecological experts and subsequently decides on the lawfulness of the sterilisation operation. We have investigated who was referred and by whom, the reasons given, and the outcomes of the legal process during an 11-year period. Methods A retrospective case note study was undertaken of all referrals to the Official Solicitor’s Office for sterilisation between 1988 and 1999. Using an established protocol, information was obtained from legal and clinical notes relating to the initial referral to the Official Solicitor, the opinions of experts, the court proceedings and the outcome. Results Seventy-three people, only three (5%) of whom were men, were referred over the 11 years. They were aged between 12 and 41 years. All but one had an intellectual disability (ID). Seventy-five per cent were living at home and did not have partners. Full applications were made for 50 of the 73 (68.5%), 39 proceeding to a court hearing. For 31 of the 39 (79.5%) cases, the court ruled that sterilisation would be in the person’s ‘best interests’. An additional six women probably had operations resulting in sterilisation without court authorization. Conclusions Referrals for sterilisation are almost always for people with IDs. In the case of the majority, it was thought that it was unlikely that they had had or will have in the future a sexual relationship. Care needs to be taken in interpreting the results in this case note study. We hypothesize that the request for sterilisation is the consequence of a complex process reflecting concerns about the future, but in the context of other family issues. The relationship between lacking the capacity to consent to sterilisation and the capacity to consent to sexual intercourse needs further exploration. Future studies including interviews with those involved are required.

Background In Taiwan, 92–95% of people with an intellectual disability (ID) live with their families, with the remaining residing in residential facilities. Instead of funding community-living alternatives, the Taiwanese Government funds only registered facilities as part of its residential policies and services. The purpose of this study was to evaluate current policies and services trends regarding people with an ID in Taiwan. Methods Both documentary research, such as an analysis of policies, services programmes, official statistics, surveys, reports and funding provision reports, and a mail survey, were conducted to examine current trends and characteristics of the 96 residential settings available for people with an ID in Taiwan. Results During the 1990s in Taiwan, residential programmes for people with an ID showed the biggest growth since 1952. Since the first ‘Community Home’ was launched in 1990, the number of smaller scale residential settings with a unit size of less than 30 has grown significantly, particularly since 2000. However, the rate of institutionalization of people with an ID and who live in the institutions has also risen. Conclusions In Taiwan, unlike in Western societies, residential services for people with an ID provided by formal care systems are tending to grow in number, and these include both large and smaller residential settings.

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.

Transition to adulthood may be a period of vulnerability for health for individuals with intellectual disabilities. No large-scale studies have compared the health of individuals with and without intellectual disabilities undergoing transition. The aims of this study were (1) to compare health during transition for individuals with and without intellectual disabilities across a whole country population and (2) to establish whether transition is associated with health in the population with intellectual disabilities.Data were drawn from Scotland's Census, 2011. Frequency data were calculated for young people with and without intellectual disabilities. Logistic regressions were used to determine the extent to which intellectual disabilities account for seven health outcomes (general health, mental health, physical disabilities, hearing impairment, visual impairment, long-term illness and day-to-day activity limitations), adjusted for age and gender. Within the intellectual disabilities population, logistic regressions were then used to determine whether age group (13-18 or 19-24 years) is associated with the seven health outcomes, adjusted by gender.A total of 5556/815 889 young people aged 13-24 years had intellectual disabilities. Those with intellectual disabilities were 9.6-125.0 times more likely to have poor health on the seven outcomes. Within the population with intellectual disabilities, the 19- to 24-year-olds with intellectual disabilities were more likely to have mental health problems than the 13- to 18-year-olds, but did not have poorer health on the other outcomes. The difference between age groups for mental health problems was greater for young people who did not have intellectual disabilities, but their overall level of mental health problems was substantially lower than for the young people with intellectual disabilities.This largest-to-date study quantifies the extent of the substantial health disparities experienced by young people with intellectual disabilities compared with people without intellectual disabilities. The young population with intellectual disabilities have substantial health problems; therefore, transition between child and adult services must be carefully planned in order to ensure that existing health conditions are managed and emerging problems minimised.

Anxiety disorders have high prevalence in people with intellectual disabilities. In populations without intellectual disabilities, cognitive behavioural therapy is a first line psychological therapy for these presentations. There is no existing review of the range of methods and outcomes from intervention studies in this area.A systematic review was carried out following guidance in the Cochrane handbook for systematic reviews of interventions.Nineteen studies were identified. The majority of reports were descriptive case studies; the most frequently described presentations were non-specific anxiety disorders and post-traumatic stress disorder; the most frequently described cognitive techniques were psycho-education and interventions directly aimed at thoughts and beliefs and most studies reported positive outcomes, although the better controlled studies tended to report less comprehensive impacts.A range of presentations have been described although the area is still at a primarily descriptive stage. We discuss intervention structures and approaches that require further research.

Measuring quality of life (QoL) in people with intellectual disabilities (IDs) can help organisations and practitioners to implement evidence-based practices and develop person-centred planning and individualised supports. There is no reliable and valid instrument for assessing QoL in people with ID in Colombia. We investigated the internal structure of the Colombian version of the INICO-FEAPS scale and tested whether the scale identified the eight interrelated domains of the QoL conceptual framework originally described by.Data were collected from 602 adults with moderate levels of ID and respective proxies, who completed the self-report and the report by other scales, respectively. Five measurement models were tested through confirmatory factor analysis.The eight correlated dimension model showed the best fit to the data. Reliability and convergent validity of the indicators were satisfactory in both versions of the scale (self-report and proxy report).This study contributes to research on QoL measurement by providing the first empirical evidence regarding the dimensionality, internal structure and psychometric properties of the Colombian version of the INICO-FEAPS scale. Moreover, the study presents the first adaptation of a specific QoL scale for people with ID in Colombia, which may in the future be useful for implementing evidence-based practices and developing person-centred support plans.

Various studies have found that direct support professionals (DSPs) play an important role in determining the degree to which people with intellectual disabilities (ID) are included in society. However, less research has been conducted on the psychological processes that may influence the behavioural intentions of DSPs to actually engage with and invest effort in supporting their clients' inclusion. Five possible psychological variables are identified in the literature: attitudes, social norms, experienced competencies, identity and meta-evaluation. In our research, we tested whether these processes influence the (intended) efforts DSPs make to facilitate their clients' inclusion.A structured questionnaire was sent to 927 DSPs working in one of three different locations (an ordinary non-segregated setting, a reversed non-segregated setting and a residential facility). Of these, 336 DSPs completed the questionnaire.Several variables revealed differences between the three locations, specifically in efforts to facilitate inclusion, attitudes, social norms, experienced competencies and professional identity. Looking at the overall means, we found (relatively) high scores for the experienced competencies, role identity and meta-evaluation. In contrast, the means were relatively negative regarding the DSPs' attitudes to inclusion and their assumed social norms.Direct support professionals' efforts to facilitate inclusion depend on their attitude towards inclusion, the experienced competencies, their role identity, the DSPs' meta-evaluation and, indirectly through attitudes, also on the assumed social norms of the relevant stakeholders. Organizations responsible for supporting people with ID and which may want their DSPs to make greater efforts to facilitate inclusion should pay attention to these psychological variables.

People with intellectual disabilities (ID) have unequal access to health care. While systemic efforts are addressing health inequalities, there remains a need to demonstrate that persons with ID can increase their health self-advocacy skills.A randomised control design with up to 6-month follow-up was used to evaluate the 3Rs (Rights, Respect and Responsibility) health self-advocacy training program for persons with ID (n = 31). Training involved teaching participants to recognise and redress health rights violations in the context of respect and responsibility. Training materials included PowerPoint slides and interactive video scenarios illustrating health rights, respect and responsibility problem and non-problems. Two-hour training sessions were conducted twice a week in a group format where participants played a game and answered questions.The health rights training group made significantly more correct responses on post training and follow-up tests than the control group. Training effects generalised to untrained scenarios and in situ health interviews.The results of this study suggest that persons with ID can learn complex skills related to health self-advocacy. More research is needed to improve in situ generalisation.

The ITINERIS scale on the rights of persons with intellectual disabilities (ISRPID) was developed to measure the extent to which people with intellectual disabilities (ID) exercise their rights.The ISRPID was produced through a virtual Delphi group with 37 professionals and relatives of people with ID from four continents and was refined in small pilot groups with persons with ID in Argentina. It has 30 items and can be self-administered or completed by a proxy. Versions in three languages (English, Spanish and Portuguese) are available. Following its development, the ISRPID was applied in Chile to 705 persons with ID and to a control group of 524 college students without ID.Statistical analysis showed that family relationships, community participation, living arrangements and level of disability affect the experience of rights among people with ID. Importantly, with structured supports, people with ID appear able to exercise their rights to a level comparable to that of their peers without ID.With further development, the ISRPID may be an appropriate scale to monitor the exercise of rights contained in the United Nations Convention on the Rights of Persons with Disabilities at an individual or group level.

Article 29 of the Convention on the Rights of Persons with Disabilities guarantees equality of political rights, including the right to vote and stand for election. The affirmation of these rights, first guaranteed by the Universal Declaration of Human Rights, raises an important question given the long-standing association between political rights and beliefs concerning the abilities of citizens to reason and act independently: how and to what degree can people identified as having intellectual disabilities participate in a defining act of the democratic process? Focused specifically on the right to vote, this paper addresses the question by (1) introducing the debates that have surrounded the voting rights of this population; and (2) reporting on recent attempts in Kenya, and in England and Wales, to promote voting by people with intellectual disabilities. It concludes by considering the effectiveness of the different approaches these countries have adopted.

The history of ethical guidelines addresses protection of human rights in the face of violations. Examples of such violations in research involving people with intellectual disabilities (ID) abound. We explore this history in an effort to understand the apparently stringent criteria for the inclusion of people with ID in research, and differences between medical and other research within a single jurisdiction.The history of the Helsinki Declaration and informed consent within medical research, and high-profile examples of ethical misconduct involving people with ID and other groups are reviewed. The UN Convention on the Rights of Persons with Disabilities is then examined for its research implications. This background is used to examine a current anomaly within an Australian context for the inclusion of people with ID without decisional capacity in medical versus other types of research.Ethical guidelines have often failed to protect the human rights of people with ID and other vulnerable groups. Contrasting requirements within an Australian jurisdiction for medical and other research would seem to have originated in early deference to medical authority for making decisions on behalf of patients.Stringent ethical requirements are likely to continue to challenge researchers in ID. A human rights perspective provides a framework for engaging both researchers and vulnerable participant groups.

People with intellectual disabilities (IDs) are growing older as a population cohort. Many live at home with family members who are their carers but who are also becoming older and less able to provide care. The housing and support preferences of people with IDs and their carers into older age are poorly characterised in the literature.Focus groups and individual interviews were conducted with 15 people with IDs who work in supported employment and with 10 family members who care for adults with IDs. Data were thematically analysed independently by two researchers.The major themes that emerged were as follows: (1) living arrangements; (2) housing preferences; (3) ageing in place; and (4) transition from informal to formal housing and support services.Participants with an ID and their carers want housing and support that enable people with an ID to maintain and enhance their social networks with their peers as they grow older and require transition to formal housing and support services, and to be able to 'age in place'. A preference was expressed for models of housing that provide the opportunity for people with an ID to live in close proximity to their peers and in large groups in the community rather than in small, dispersed community housing.

There is evidence to suggest a relationship between the way in which staff perceive challenging behaviour and burnout in staff working with people with intellectual disabilities (ID) and challenging behaviour. However, the evidence of a direct link is equivocal and it is possible that a number of different variables mediate this relationship. The aim of the study is to confirm whether there is a relationship between challenging behaviour and staff burnout, and in addition, to test whether staff perceptions about challenging behaviour mediate this relationship.Seventy-eight staff completed measures of burnout, challenging behaviour and perceptions about challenging behaviour. The perceptions explored included beliefs about the timeline of behaviour, staff's perception of whether they themselves have control over the behaviour, beliefs about clients' ability to control the behaviour and staff's negative emotional responses.Significant positive correlations were found between challenging behaviour and burnout, challenging behaviour and cognitive variables, and cognitive variables and burnout. Regression analyses demonstrated that negative emotions mediate the relationship between challenging behaviour and burnout.The results show evidence that there is a relationship between challenging behaviour and burnout that is mediated by negative emotion, namely the fear of potential assault.

Stressful life events have been linked to psychopathology in the general population, but few studies have considered the relationship between life events and psychopathology for people with intellectual disabilities (ID), and the link between particular life events and hospital use.Informants provided data on 746 adults with ID who had experienced at least one 'crisis'. Informants completed a checklist of recent life events from the Psychiatric Assessment for Adults with Developmental Disabilities Checklist (PAS ADD checklist) and also indicated whether the crisis resulted in a visit to the hospital emergency department.Individuals experiencing life events in the past year were more likely to visit the emergency department in response to crisis than those who did not experience any life events. Individuals experiencing a move of house or residence, serious problem with family, friend or caregiver, problems with police or other authority, unemployed for more than 1 month, recent trauma/abuse, or a drug or alcohol problem were more likely to visit the emergency department.Six specific life events were found to be associated with use of emergency departments in response to crisis. We suggest intervention efforts be targeted towards people who experience life events, particularly these events, as they may be a risk factor for hospital visits.

Staff providing support to people with intellectual disabilities are exposed to stressful work environments which may put them at an increased risk of burnout. A small prior literature has examined predictors of burnout in disability support staff, but there is little consensus. In this study, we examined direct and indirect associations between work stressors (i.e. challenging client behaviour), staff emotional response to the behaviour (i.e. perceived stress, anxiety, depression), social and organisational support resources, and staff burnout.A short survey examined client behaviour, staff psychological stress, anxiety, depression, social support (number, satisfaction), organisational support and burnout in 80 disability support staff in a community setting.Burnout levels were similar to or slightly lower than normed values for human services staff. Cross-sectional regression analyses indicated that depression symptoms and organisational support were related to worse emotional exhaustion and depersonalisation, whereas less social support was related to less personal accomplishment. Social support satisfaction (but not social support number or organisational support) moderated between high psychological stress to less emotional exhaustion.Taken together, these results suggest that depression symptoms and low organisational support were frequently concurrent with burnout symptoms. Furthermore, worker's personal and organisational supports may have helped bolster their sense of personal accomplishment, and buffered against the potential for emotional exhaustion.

Challenging behaviour is a major problem among people with intellectual disabilities. Physical factors may be an important cause. The aim of the present systematic review was to determine the physical conditions associated with challenging behaviour.A literature search was conducted in PubMed and the Cochrane systematic review database for empirical studies published between 1990 and 2008. The quality of all the studies that met the inclusion criteria was assessed using the SIGN-50 methodology checklists.The search identified 45 studies, which looked at general medical conditions, motor impairment, epilepsy, sensory impairment, gastrointestinal disease, sleep disorders, dementia and others. There were four high-quality observational studies, seven well-conducted observational studies, 21 observational studies of low methodological quality and 13 non-analytical studies. There were significant and independent associations between challenging behaviours and urinary incontinence, pain related to cerebral palsy and chronic sleep problems, and between self-injurious behaviour and visual impairment. No association was found with hearing impairment, bowel incontinence, mobility impairment or epilepsy. Many other physical conditions were not addressed at all.Medical conditions can play a role in challenging behaviour, and this should be evaluated in the clinical setting. So far, the level of evidence is generally low, and longitudinal studies are completely lacking. We recommend a systematic approach to research examining the role of physical conditions in challenging behaviour, the ultimate aim being to establish a basis for the development of clinical guidelines.

Although people with intellectual disabilities (ID) are increasingly consulted in research, participation in research agenda setting processes is limited. This is not surprising as their voice can easily be dominated in consultations with researchers. The aim of this article is to explore the potentials of enclave deliberation as a first step towards broad consultation in research agenda setting.The research agenda setting process followed a responsive methodology, which is characterised by a cyclical and emergent design. Two persons with ID and one parent participated in the research team. Seven persons with ID and six parents were interviewed individually. Subsequently, 10 focus groups were organised with people with ID and four focus groups with parents. Also, a questionnaire was sent to parents.The process towards involvement of people with ID was characterised by several steps that guided enclave deliberation. First, stories of people were collected that reflected their intimate voice. Then, a political voice was further developed through dialogue and interaction in focus groups. This process resulted in a prioritised list of nine potential topics for research.The process of developing intimate voice and political voice can be regarded as a concretisation of enclave deliberation among disempowered groups. These steps are necessary to initiate a process towards establishing a broad consultation between different stakeholders about research on ID.

In recent years, there has been increased research interest in the functioning of working memory in people with intellectual disabilities. Although studies have repeatedly found these individuals to have weak working memory skills, few investigations have distinguished between different degrees of intellectual disability. This study aims to help close this research gap and, in so doing, to examine whether the deficits observed reflect a developmental lag or a qualitative deviation from normal development.In a 5-group design, the working memory performance of a group of 15-year-olds with mild intellectual disability (IQ 50-69) was compared with that of two groups of children (aged 10 and 15 years) with borderline intellectual disability (IQ 70-84) and with that of two groups of children with average intellectual abilities (IQ 90-115) matched for mental and chronological age (aged 7 and 15 years). All children were administered a comprehensive battery of tests assessing the central executive, the visual-spatial sketchpad, and the phonological loop.The results showed deficits in all three components of working memory, and revealed that these deficits increased with the degree of intellectual disability. The findings indicate that, relative to their mental age peers, children with learning difficulties show structural abnormalities in the phonological store of the phonological loop, but developmental lags in the other two subsystems.Similar patterns of results emerged for both subgroups of children with intellectual disability, indicating that problems with phonological information processing seem to be one of the causes of cognitive impairment in individuals with intellectual disability.

Background Staff working within secure services for people with intellectual disabilities (ID) are likely to work with sexual offenders, but very little attention has been paid to how they think about this sexual offending behaviour. Method Forty-eight staff working within secure services for people with ID were recruited and completed the Attribution Style Questionnaire in relation to the sexual offending behaviour and challenging behaviour of men with mild ID. Attributions towards challenging behaviour and sexual offending were compared and relationships between level of ID and seriousness of the sexual offence were explored. Results The results indicated that staff attributed sexual offending as more external to the staff group than they did for challenging behaviour. Sexual offending behaviour was also seen as more stable, and less controllable by people with ID than was challenging behaviour. Sexual offending was also attributed as more uncontrollable by the staff group than challenging behaviour. There was a significant negative correlation between general intellectual functioning and several attributional dimensions regarding sexual offending, but not challenging behaviour. Sexual offending that was coded as more serious was attributed as universal and uncontrollable by the staff group. Conclusions The differences between staff attributions regarding challenging behaviour and sexual offending potentially relate to the decision-making processes involved in deciding whether or not to involve criminal justice agencies when someone with ID commits a sexual offence. Further research within this area is warranted.

Social support has been identified as a major protective factor in preventing mental health problems and also as a major contributor to quality of life. People with intellectual disabilities (ID) have been identified as having limited social support structures. Interventions have been focused on promoting their social presence and integration. However, previous studies have shown that this does not always lead to the formation of social relationships. To date few studies have looked at how having an ID leads to impoverished social networks. This study aimed to do this by contrasting the social relationships of people with physical disabilities (PD) and people with ID.Two groups of participants were recruited; 30 people with mild ID and 17 people with PD. Social and functional support networks were assessed, in addition to life experiences. Between and within group differences were then explored statistically.Adults with ID had more restricted social networks than PD, despite being involved in more activities. Social support for adults with ID was mainly provided by family and carers and few relationships with non-disabled people were identified. In contrast adults with PD had larger social networks than had been reported in the mainstream literature and had a balance of relationships with disabled and non-disabled people.The results suggest that there are additional processes attached to having an ID, which lead to continued impoverished lifestyles. The findings also endorse other work that suggests being physically integrated and engaged in a wide range of activities does not guarantee good social and emotional support.

Services with people with intellectual disabilities (ID) are increasingly structured by regulations, policies and licensing standards by public funding entities. The key responsibility for direct care staff often becomes that of compliance with all the rules and regulations.The impact of an increasing focus on compliance with regulations in the systems of services and supports for people with ID is explored along with the absence of focus on professional commitment and relationships. This exploration is done through a review of literature and also anecdotes and observations from 30 years of professional experience in working with direct care staff.Whether the source for enhanced regulation is concern about health and safety, honouring rights, meeting laws and/or an underlying fear that we cannot rely on the caregivers because of the turnover or lack of skill; we end up building a system based more and more on compliance, on regulations, programme and behavioural plans and competencies, without the same kind of concern or attention for people who are doing the caring, their motivation and what they need. One of the hypotheses and conclusions of this article is that the focus on compliance diminishes professional competence and commitment, and contributes both to staff disillusionment and to the rapid turnover.As recruitment and turnover in the direct support professional workforce become ever more difficult problems, the newer focus on person-centred planning, self-directed supports and workforce development have both possibilities and problems in enhancing staff commitment in relationships with people they support. The importance of enhancing and supporting commitment also calls for new forms of professional identity and education that recapture the language and habits of commitment while also providing opportunities for staff to reflect on the values, visions and commitments that support their work.

Although the elevated occurrence of epilepsy in people with intellectual disabilities (ID) is well recognized, the nature of seizures and their association with psychopathology and carer strain are less clearly understood. The aims were to determine the prevalence and features of epilepsy in a community-based population of adults with ID, and to explore whether the presence of epilepsy was associated with greater psychopathology or carer strain.Data were collected on the age, gender, place of residence, adaptive and challenging behaviour, social abilities and psychiatric status of 318 adults from 40 general practices, together with the degree of malaise and strain of family carers. For participants with epilepsy, a nurse collected information on seizures, investigations, treatment and carer concerns by interview. Association between epilepsy and psychiatric morbidity, challenging behaviour and caregiver malaise or strain, was explored by comparing those with epilepsy with a comparison group matched on adaptive behaviour.Fifty-eight participants (18%) had epilepsy: 26% were seizure free, but 34% had extremely poorly controlled seizures. Earlier onset and seizure frequency were associated with adaptive behaviour. Carer concerns were related to seizure frequency and a history of injury. There were no significant differences in psychopathology, carer malaise or caregiver strain between the matched epilepsy and non-epilepsy groups.This study supports the high occurrence and chronicity of epilepsy among people with ID. While psychopathology and carer strain is common within this population, underlying disability-related factors appear to be more important than the presence of epilepsy per se.

Summary Background The international literature has documented that self-determination is impacted by environmental factors, including living or work settings; and by intraindividual factors, including intelligence level, age, gender, social skills and adaptive behaviour. In addition, self-determination has been correlated with improved quality of life (QoL). This study sought to contribute to the growing literature base in this area by examining the relationship among and between personal characteristics, self-determination, social abilities and the environmental living situations of people with intellectual disabilities (ID). Methods The study involved 141 people with ID residing in Italy. Healthcare professionals and social workers who had known participants for at least 1 year completed measures of self-determination, QoL and social skills. Analysis of variance was conducted to verify whether different levels of intellectual impairment were associated with different degrees of the dependent variables. The Pearson product–moment correlation was used to examine any relationships among dependent variables and IQ scores. Finally, discriminant function analysis was used to examine the degree to which IQ score, age, self-determination and social abilities predicted membership in groups that were formed based on living arrangement, and on QoL status (high vs. low). Results The anova determined, as expected, that participants with more severe ID showed the lowest levels of self-determination, QoL and social abilities. Discriminant function analysis showed that (a) individuals attending day centres were distinguished from those living in institutions in that they were younger and showed greater autonomy of choice and self-determination in their daily activities; (b) basic social skills and IQ score predicted membership in the high or low QoL groups; and (c) the IQ score predicted membership in the high or low self-determination groups. A manova conducted to examine gender- and age-level differences on self-determination found gender differences; women had higher self-determination scores than men. Conclusions These findings contribute to an emerging knowledge base pertaining to the role of intraindividual and environmental factors in self-determination and QoL. In general, the study replicated findings pertaining to the relative contribution of intelligence to self-determination and QoL, added information about the potential contribution of social abilities, and pointed to the potentially important role of opportunities to make choices as a particularly important aspect of becoming more self-determined, at least in the context of residential settings.

Background Meaningful communication with people with profound communication difficulties depends on the ability of carers to recognize and translate many different verbal cues. Carers appear to be intuitively skilled at identifying distress cues, but have little confidence in their observations. To help in this process, a number of pain tools have been developed, but this sits uncomfortably with the lack of evidence that pain has any specific signs or behaviours. A palliative care team working with people with intellectual disabilities developed the Disability Distress Assessment Tool (DisDAT) to document a wide range of signs and behaviours of distress and when an individual is content. Method The tool was piloted with 16 carers and 8 patients. It was then assessed using quantitative and qualitative methods, employing 56 carers in routine clinical situations with 25 patients, most with severe communication difficulties. Carers of 10 patients participated in semi-structured interviews exploring the signs and behaviours demonstrated by patients when distressed and when content. These same 10 patients were observed for distress cues during different activities. Results It became clear that distress did not have a common meaning among carers, but there was a clear understanding that distress did not just cover physical pain. The range of distress cues was wide, with no evidence that any cues were specific to particular causes. Although some distress cues were common between patients, each patient had a distinct pattern of distress cues. In addition, different carers identified a different range of distress cues, while the length of the relationship did not influence the number of cues identified. Most distress cues were a change from the norm, but some patients demonstrated distress as an absence of content cues. Carers found the DisDAT simple to use and useful, and several felt that DisDAT would have helped advocate for the patients in previous conflicts with clinical teams. Conclusions There was no evidence that pain has any specific signs or behaviours. The preliminary and assessment phases showed that distress was a useful clinical construct in providing care. The DisDAT reflected patients’ distress communication identified by a range of carers, and provided carers with evidence for their intuitive observations of distress.