Search

People with intellectual disabilities (ID) have high rates of psychiatric illness and are known to live in more deprived areas than the general population. This study investigated the relationship between area deprivation and contact with ID psychiatry.Psychiatric case notes and electronic records were used to identify all patients who had face-to-face contact with community ID psychiatric services over 1 year in the North East Community Health Partnership of Greater Glasgow and Clyde (estimated population 177,867). The Scottish Index of Multiple Deprivation (SIMD) were determined for the patient sample and for the general population living in the same area.Between 1 June 2012 and 1 June 2013, 184 patients were seen by ID psychiatry over a total of 553 contacts, with valid SIMD data for 179 patients and 543 contacts. Fifty-two per cent of patients (n = 93) lived in the most deprived SIMD decile, and 90.5% (n = 152) in the lowest 5 deciles. Compared with the general population, there were significantly more patients than expected living in the most deprived decile (Fisher's Exact test, P = 0.009) and in the most deprived 5 deciles (Fisher's Exact test, P = 0.001). The median number of contacts was 2 (interquartile range = 1-3). There was no significant association between the number of contacts and SIMD decile. Forty-eight point one per cent (n = 261) of all contacts were with patients living in the most deprived decile and 88.6% (n = 481) in the most deprived 5 deciles. This was significantly more than expected compared with general population data (Fisher's Exact test, P = 0.008 and Fisher's Exact test, P ≤ 0.001).In the area under study, contact with ID psychiatry was greater in more deprived areas. Given the high psychiatric morbidity of people with ID, if services do not adjust for deprivation, this may lead to further discrimination in an already disadvantaged population.

Several studies have found a heightened prevalence of mental health disorders in people with intellectual disabilities (ID). There have been a number of successful case series and two promising controlled treatment trials of cognitive behaviour therapy (CBT) for emotional disorders (excluding anger) for people with ID. Several authors have promoted the development of trans-diagnostic approaches to cognitive treatment. The present study extends this work with the development and evaluation of a trans-diagnostic treatment manual for CBT in people with ID.A controlled treatment trial was conducted with 12 participants in treatment and waiting list control data. Each treatment participant was matched to a control on age, IQ, presenting problem, and Brief Symptom Inventory (BSI) global severity index (GSI) score. The treatment group was also evaluated on the Glasgow anxiety and depression scales and was followed up for 3 to 6 months after treatment.There were no significant differences between groups at baseline. Following treatment, the CBT group was significantly improved when compared with the control group on the GSI scale of the BSI. The ancovas for all other measures were not significant but there were significant improvements for the treatment group on all scaled except BSI depression from pre to post-CBT. Gains were maintained to follow up, and changes were associated with large effect sizes.It was possible to treat a range of symptoms and psychiatric diagnoses with a general trans-diagnostic CBT manual. The effects of therapy were promising, suggesting that the participants could respond to treatment in a meaningful and helpful manner and supporting the case for further evaluation of the trans-diagnostic approach in ID.

People with intellectual disabilities (ID) are rarely asked about their experiences as users of psychological services and little is known about the views of clients with ID who have undergone cognitive behavioural therapy (CBT). This study aimed to gather the views of adults with ID who had recently taken part in a cluster randomised control trial (RCT) of a staff-delivered manualised CBT anger management group intervention.A qualitative method, Interpretative Phenomenological Analysis (IPA), was employed and eleven participants were interviewed. The interviews took place after the intervention, within two weeks of the end of the group, to gain an understanding of service users' experiences of participating in a CBT group.IPA of the interview transcripts indicated that the intervention was experienced as effective and enjoyable and a number of themes were identified including: 'the importance of relationships', 'a new me', 'new and improved relationships', 'presenting myself in a positive light' and 'what the group didn't change'.The results will be discussed in the context of applying group CBT for adults with ID and implications for service development.

A supportive social network is crucial for facilitating social inclusion, which can, in turn, contribute to the quality of life (QOL) for people with intellectual disabilities (ID). In this study, we investigate how people with mild ID perceive their social networks and which network characteristics relate to satisfaction with the network and perceived QOL.Data were gathered from 33 young adults with a mild to borderline ID using structured questionnaires: the MSNA to map the social network, the IDQOL-16 to assess QOL, and a questionnaire to determine satisfaction and wishes with regard to the social network.The majority of the participants (73.1%) were satisfied with their social networks. Improvement in the area of strengthening existing ties (e.g. more frequent contact, better contact) was desired as opposed to expansion of the network. Affection--especially towards family and professionals--was most strongly related to perceived QOL. It appears to be essential that relatives live in the same town, can frequently meet up and provide both emotional and practical support.The significance of family and the importance of high-quality interpersonal relationships between professional and client in the lives of young adults with ID cannot be overestimated. Although measures of satisfaction and wishes can have limitations, in actual practice it is considered useful to assess the opinions of clients with respect to their social networks. Interventions can then be tailored to the needs and wishes of the persons themselves.

Research evidence to date concerning offending by people with intellectual disabilities (ID) has concentrated on male perpetrators and little is known about their female counterparts. This systematic literature review examines evidence on psycho-social therapies for the female intellectually disabled population within healthcare forensic facilities.A search of health, psychology and social science databases was conducted, using a varying combination of search words to detect relevant literature for this review. Four studies published between 2001 and 2012 were identified for inclusion. Articles were organised and compared in relation to study characteristics, sample, kind of treatment, instruments used to measure treatment impact, and study findings.In total, four studies were identified that met the inclusion criteria. A range of Cognitive Behaviour Therapy (CBT)-orientated group interventions for people with learning disabilities were evaluated and in most studies improvements were reported in relation to reducing problem behaviour. Evidence that has been generated by the studies is, however, limited in its explanatory value because of study design and related methodological issues.This review has identified a significant gap in relation to research-based therapies for women with ID and forensic care needs. In particular, more research is needed focusing on women with a dual diagnosis of ID and psychiatric disorder who present challenging or criminal behaviour.

In this study realised in collaboration with the department of psychology and parapsychology of Andhra University, validation of the Aberrant Behavior Checklist-Community (ABC-C) in Telugu, the official language of Andhra Pradesh, one of India's 28 states, was carried out.To assess the factor validity and reliability of this Telugu version, 120 participants with moderate to profound intellectual disability (94 men and 26 women, mean age 25.2, SD 7.1) were rated by the staff of the Lebenshilfe Institution for Mentally Handicapped in Visakhapatnam, Andhra Pradesh, India. Rating data were analysed with a confirmatory factor analysis. The internal consistency was estimated by Cronbach's alpha. To confirm the test-retest reliability, 50 participants were rated twice with an interval of 4 weeks, and 50 were rated by pairs of raters to assess inter-rater reliability.Confirmatory factor analysis revealed that the root mean square error of approximation (RMSEA) was equal to 0.06, the comparative fit index (CFI) was equal to 0.77, and the Tucker Lewis index (TLI) was equal to 0.77, which indicated that the model with five correlated factors had a good fit. Coefficient alpha ranged from 0.85 to 0.92 across the five subscales. Spearman's rank correlation coefficients for inter-rater reliability tests ranged from 0.65 to 0.75, and the correlations for test-retest reliability ranged from 0.58 to 0.76. All reliability coefficients were statistically significant (P 0.01).The factor validity and reliability of Telugu version of the ABC-C evidenced factor validity and reliability comparable to the original English version and appears to be useful for assessing behaviour disorders in Indian people with intellectual disabilities.

Research has demonstrated a relationship between the experience of life events and psychopathology in people with intellectual disabilities (ID), however few studies have established causal links and to date no prospective studies have utilised a measure of trauma that has been developed specifically for this population group.This 6-month prospective study examined longitudinal relationships between adverse life events and trauma in 99 adults with mild to moderate ID.Life events during the previous 6 months were significantly predictive of levels of trauma as measured by the self-report Lancaster and Northgate trauma scales (LANTS), and the informant LANTS behavioural changes, frequency and severity sub-scales. This prospective causal relationship was demonstrated while controlling for any prior life events or pre-existing trauma, though the relationship was not moderated by social support.Evidence of a causal relationship between adverse life events and trauma symptoms is important for treatment planning and funding allocation.

Producing accessible information regarding health issues is very important in order to ensure that people with intellectual disabilities (ID) have equal access to services and can make informed decisions about their treatment.This study examined whether an Easy Read leaflet improved service users' comprehension and compared the efficacy of two different modalities of presenting information: 'text and pictures' or 'pictures only'. Participants' knowledge was assessed at baseline and immediately after the leaflet.Our findings indicate that the use of the leaflet improved knowledge but neither modality of presenting information was significantly more effective at making the document easier to understand. Contrary to expectation, people with milder ID may find pictures more effective in the absence of text.Although pictures were not found to be detrimental, our results do not favour the use of pictures as well as text when giving information, particularly to people with milder disabilities. The generalised use of text and picture formats for all people with ID in spite of the scant evidence supporting its effectiveness is concerning.

Person-centred planning has played a key role in the transformation of intellectual disabilities services for more than a decade. The literature has identified clear advantages for service users when service delivery is planned around the individual rather than the user is made to fit into service structures. Researchers however have pointed out that there is a lack of evidence that person-centred planning positively influences outcomes for users.Our study examined the application of person-centred planning during transition for young people with intellectual disabilities. We investigated the nature and content of 44 person-centred reviews of transition planning for this population in a local authority in the UK. We carried out a documentary analysis of all person-centred plans and conducted telephone interviews with all families participating in the programme. We focused on the issue of attendance at review meetings and what was discussed during the meetings.Analysis of the data shows an increase in the participation of young people and carers at review meetings and a significant shift in topics discussed during the transition planning process compared with previous programmes. However, some of these effects may dissipate once young people are actually leaving school as planning well is not synonymous with having an improved range of placement options.The findings suggest that person-centred planning can impact positively on some aspects of transition planning, while it may be too optimistic to expect radical improvement in other area. Key to further improvements is to complement person-centred planning with consistent involvement of all relevant stakeholders in planning for individuals.

Obesity is a major health problem in people with intellectual disabilities. It is also widely accepted that low-grade systemic inflammation associated to obesity plays a key role in the pathogenic mechanism of several disorders. Fortunately, physical activity has shown to improve inflammation in people with metabolic syndrome and type 2 diabetes. Accordingly, we assessed the influence of aerobic training on pro-inflammatory cytokines and acute phase proteins in women with Down syndrome.To achieve this outcome, 20 premenopausal obese young women with Down syndrome volunteered for this study. Eleven were randomly assigned to the intervention group and performed a 10-week aerobic training programme, three sessions per week, consisting of a warm-up then a 30- to 40-min treadmill exercise at a work intensity of 55-65% of peak heart rate followed by a cooling-down period. The control group included nine age-, sex- and body mass index-matched women with Down syndrome. Fat mass percentage and fat distribution were measured. Plasmatic levels of tumour necrosis factor (TNF)-α, interleukin (IL)-6 and fibrinogen were assessed by commercial enzyme-linked immunosorbent assay kits. C-reactive protein (CRP) was assessed by nephelometry.Plasmatic levels of TNF-α (11.7 ± 1.6 vs. 9.2 ± 1.3 pg/ml; P = 0.022), IL-6 (8.2 ± 1.1 vs. 6.1 ± 0.9 pg/ml; P = 0.014) and high sensitive CRP (0.62 ± 0.11 vs. 0.53 ± 0.09 mg/dl; P = 0.009) were significantly reduced in the intervention group. Further, significant correlations between plasmatic and anthropometric parameters were found.A 10-week training programme reduced pro-inflammatory cytokines and acute phase proteins in obese young women with Down syndrome. Long-term, well-conducted studies are still required to determine whether correction of this low-grade inflammation improves clinical outcomes of women with trisomy 21.

People with intellectual disabilities (ID) are at risk that their health problems, many of which cause pain, go unrecognised and untreated. Their understanding and personal experiences of pain have received little research attention.Information was collected from 15 adults with ID using semi-structured interviews about their experiences and understanding of pain. Transcripts were analysed using content analysis.Participants described pain using negative meanings and strong imagery, with various causes of pain suggested, but said little about how they coped with pain. Participants varied in whether they reported pains to carers, some choosing to hide the experience. There seemed a general belief that others can tell when someone is in pain.Conversations regarding pain with adults with ID are a real challenge; health-care staff need to think carefully about the questions they ask. Possessing verbal skills cannot be taken as an indication that pain will be communicated.

Modifying the consistency of food and drink is a strategy commonly used in the management of dysphagia for people with intellectual disabilities (ID). People with ID often depend on others for the preparation of food and drink and therefore depend on those caregivers achieving the correct consistency to keep them safe and avoid discomfort during mealtimes. Clinical experience and prior research have demonstrated that although training can improve modification, carers often find modification difficult and potentially stressful and recommend additional support for carers. Fluid consistency is often modified through the addition of powdered thickener. This study investigates the efficacy of typical training and use of consistency guides, the Thickness Indicator Model (TIM) tubes, in helping carers to modify fluids accurately.A 3 × 3 pre-post experimental design with a control group was employed to compare the observed accuracy of modification across three groups and at three time points (pre-intervention baseline, immediately post-training intervention and 3-10 months post-training). Sixty-two paid carers who supported people with ID were recruited to participate in the study and each was randomly allocated to one of the three groups: a control group given written guidance only, a group who received typical training and written guidance and a group who received training, written guidance and the TIM tubes.Typical training resulted in significantly greater carer accuracy in modifying fluid consistencies when compared with written guidance alone. Use of the TIM tubes also significantly improved accuracy in the modification of drinks compared with the group who modified with the aid of written guidance alone. At 3-10-month follow-up only the group who received typical training alongside the TIM tubes were significantly more accurate than the Written Guidance group. Further research is warranted to ascertain the effectiveness of the training and the utility of the TIM tubes in improving accuracy over a longer time scale and in individuals' usual living environments.

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 (ID) receive primary care in community-based practices and are encouraged to participate in the physician-patient relationship. However, the nature of this participation is not known.Qualitative data were analysed to obtain perspectives from patients and providers regarding clinic visits. Patient participants were recruited from community organisations, while physician participants were recruited from emails and phone calls to local and regional practices and a national and regional list serve. Analysis methods derived from grounded theory were used.Twenty-seven women with ID and 22 family physicians were interviewed. Themes important to both groups included time, how the support worker should be used in the encounter and the nature of the physician-patient relationship. Patients expressed frustration at how little time they spent with their physician, and wished that physicians would speak directly to them instead of to their support worker. Physicians felt that patients with ID took too much time, and said that they preferred communicating with the support worker. The interviews also revealed unconscious biases about people with ID.Patient participation is encouraged for people with ID, but is limited because of both physician and patient factors. Greater awareness of these factors may improve care for patients with ID.

How do human rights help us with the experiences of people with intellectual disabilities (ID) who face discrimination and barriers in their sexual lives? Men with ID who are gay face a whole range of rights violations when it comes to exercising their sexual identity. How can such a seemingly marginalised group draw on rights based claims for better and equal treatment? This paper explores how the power of men's own stories may usefully challenge prevailing social norms and in turn strengthen human rights claims in this area. It also reflects on the challenges posed to such an agenda by current economic difficulties and changes in the organisation of adult social care in the UK.The paper draws on empirical research with gay men with ID completed in the UK in 2005 and briefly revisits some key messages from the data. It also considers the wider literature on the power and possibilities of human rights, 'intimate stories' and translating human rights into everyday change.Gay men with ID tell powerful stories of love, longing and exclusion. Such stories have the capacity to transform wider social attitudes and in turn strengthen the rights claims of this marginalised groups. There are question marks about the possibility of such change in a time of austerity and the broader move in the UK's welfare state from the collective to the individual consumer of services. However, the telling of men's 'intimate stories' creates an almost unassailable challenge to current discriminatory practices and norms.

In the Netherlands, no self-report screening questionnaire for anxiety in people with intellectual disabilities (ID) was available yet. Therefore, we have translated the Glasgow Anxiety Scale for people with an Intellectual Disability (GAS-ID) into Dutch and studied its reliability and validity in adults with borderline, mild or moderate ID.Test-retest reliability was studied in 66 participants, convergent validity against the Anxiety sub-scale of the Hospital, Anxiety and Depression Scale (HADS-A) in 96, and criterion validity against psychiatric diagnosis in 195 participants.Internal consistency was α = 0.86 and test-retest reliability ICC = 0.89 (95% CI: 0.82-0.93). Correlation with the HADS-A was r = 0.61 (95% CI: 0.47-0.72); sensitivity was 83.9% (95% CI: 72.2-91.2) and specificity was 51.8% (95% CI: 43.6-59.9) using a cut-off score of 17. Missed diagnoses (false-negatives) were mostly specific phobias. Of the false-positives, 38 of 66 participants (58%) had another psychiatric diagnosis.The Dutch version of the GAS-ID is a reliable screening instrument with satisfactory sensitivity, but moderate specificity for anxiety disorders. Although specificity for anxiety disorders is only moderate, high scores appear to be indicative of other psychiatric problems too, justifying referral for psychiatric assessment of false-positives.

Attitudes to the inclusion of people with intellectual disabilities (IDs) have been studied extensively, yet evidence on public awareness about ID and stigma is limited. The relationship between attitudes, knowledge and stigma associated with ID is poorly understood. The present study examined these factors and the relationships between them in the context of a multicultural society.UK residents of working age (n = 1002) were presented with a diagnostically unlabelled vignette of someone with a mild ID. They were asked to label the difficulties presented and to complete measures of social distance and attitudes to the inclusion of people with IDs.While attitudes to the inclusion of people with IDs were relatively positive overall, social contact was viewed with ambivalence. Inclusion attitudes and social distance were only moderately correlated. Across the whole sample 28% recognised typical symptoms of mild ID. Recognition of ID was associated with lower stigma and more positive attitudes than attribution of the difficulties presented to other causes. White Westerners showed increased knowledge, lower stigma and favoured inclusion more than participants from ethnic minorities. Among the latter group, Asians showed lower stigma and attitudes more in line with inclusion policies than participants of Black African/Caribbean backgrounds. Once a host of contextual factors were considered jointly, only contact was consistently associated with the variables measured.Stigma associated with ID is of concern across all ethnic groups, although it appears to be increased among the public from ethnic minorities. Given that contact and awareness are associated with reduced stigma, they should be considered as prime foci for efforts to tackle ID stigma. The current findings serve as baseline for attempts to increase public awareness and tackle stigma.

Although the promotion of social inclusion through sports has received increased attention with other disadvantaged groups, this is not the case for children and adults with intellectual disability who experience marked social isolation. The study evaluated the outcomes from one sports programme with particular reference to the processes that were perceived to enhance social inclusion.The Youth Unified Sports programme of Special Olympics combines players with intellectual disabilities (called athletes) and those without intellectual disabilities (called partners) of similar skill level in the same sports teams for training and competition. Alongside the development of sporting skills, the programme offers athletes a platform to socialise with peers and to take part in the life of their community. Unified football and basketball teams from five countries--Germany, Hungary, Poland, Serbia and Ukraine--participated. Individual and group interviews were held with athletes, partners, coaches, parents and community leaders: totalling around 40 informants per country.Qualitative data analysis identified four thematic processes that were perceived by informants across all countries and the two sports to facilitate social inclusion of athletes. These were: (1) the personal development of athletes and partners; (2) the creation of inclusive and equal bonds; (3) the promotion of positive perceptions of athletes; and (4) building alliances within local communities.Unified Sports does provide a vehicle for promoting the social inclusion of people with intellectual disabilities that is theoretically credible in terms of social capital scholarship and which contains lessons for advancing social inclusion in other contexts. Nonetheless, certain limitations are identified that require further consideration to enhance athletes' social inclusion in the wider community.

Concepts such as support, quality of life and quality of services are customary in services for people with intellectual disabilities. The identification of the different ways of conceiving, prioritising and implementing these concepts by service providers can help to drive changes to achieve better personal outcomes for this population. The current study aims to identify service providers' perceptions regarding the quality of life of their clients and the quality of services they provide. It also aims to identify similarities and differences of appraisals among professionals, and to identify associations between supports, quality of life and quality of services.Data were collected from 22 service providers who attended three focus groups (professionals, direct support staff, and managers) from whom 424 comments were analysed. Service providers were asked about the required support for users, the meaning of quality of life for those users, and about features that should characterise quality services. Thematic analysis was employed and transcripts of the sessions were coded according to the dimensions of models on supports, quality of life and quality of services. Chi-squared tests were utilised to test for potential differences among groups.Each professional group has its own priorities concerning required supports. Among the organisation different and potentially conflicting perceptions regarding the meaning of experiencing quality of life coexist. Concerning quality of services, only managers mentioned personal outcomes. Finally, institutionalisation has a negative impact on supports, quality of life and quality of services.It is necessary to move beyond a shared awareness of the negative impact of institutionalisation towards the transformation of services in search of personal quality outcomes.

The aim of this study was to investigate the process of end-of-life decision-making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians.This qualitative study involved nine semi-structured interviews with ID physicians in the Netherlands after the deaths of patients with ID that involved end-of-life decisions. The interviews were transcribed verbatim and analysed using Grounded Theory procedures.Four main contributory factors to the physicians decision-making process were identified, three of which are related to the importance of relatives' wishes and opinions: (1) Involving relatives in decision-making. As they had assessed their patients as lacking capacity, the physicians gave very great weight to the opinions and wishes of the relatives and tended to follow these wishes. (2) Delegating quality of life assessments to relatives. Physicians justified their end-of-life decisions based on their medical assessment, but left the assessment of the patients' quality of life to relatives, despite having their own implicit opinion about quality of life. (3) Good working relationships. Physicians sought consensus with relatives and paid care staff, often giving greater weight to the importance of good working relationships than to their own assessment of the patient's best interest. (4) Knowledge of the patient's vulnerabilities. Physicians used their intimate, long-standing knowledge of the patient's fragile health.In order to take a more balanced decision, physicians should seek possibilities to involve patients with ID themselves and other stakeholders which are important for the patients. Physicians who have known the patient over time should rely more on their own knowledge of the patient's needs and preferences, seek the input of others, and openly take the lead in the decision-making process.

People with intellectual disabilities (ID) have an increased vulnerability to develop psychiatric problems. Moreover, the early recognition and the accurate diagnosis of psychiatric disorders in the population of persons with ID are challenging.A Dutch version of the Mini PAS-ADD, which is a screening instrument for identification of mental health problems in people with ID, was evaluated in terms of internal consistency, interinformant reliability, item grouping and criterion validity based on a large-scale random sample (n = 377) and a clinical sample (n = 99) of adults with ID.The Dutch version of the Mini PAS-ADD showed moderate internal consistency, and moderate concordance among informants. Both aspects of the reliability were comparable for different levels of ID. A factor analysis largely confirmed the scale structure. Concurrent validity with the Reiss Screen for Maladaptive Behavior was high for the Depression, Psychosis and Autism scale. The outcome of the criterion-validity analysis indicated high specificity. The sensitivity for specific psychiatric disorders by the corresponding scales was moderate, but the general sensitivity for the presence of psychopathology on the basis of any of the scales was satisfying.The present research reconfirmed the use of the Mini PAS-ADD as a primary screening device for the identification of mental health problems among people with ID.

There have been significant concerns about the care and treatment of people with intellectual disabilities (ID) when attending general hospitals, which have led to inquiries that highlight service and systems failures. One response has been the development of Learning Disability Liaison Nursing (LDLN) Services across the UK that aim to ensure that additional, specialist support is available for patients, their carers and general healthcare professionals.A mixed-methods study to investigate the impact of LDLN Services across four Scottish NHS boards was undertaken. In total, 323 referrals made over 18 months were analysed along with qualitative data drawn from interviews and focus groups with a sample of 85 participants including patients with ID (n = 5), carers (n = 16), primary care healthcare professionals (n = 39) and general hospital professionals (n = 19) and learning disability liaison nurses (n = 6).The referral patterns to the four liaison nursing services closely matched the known health needs of adults with ID, with common admissions being due to neurological, respiratory and gastrointestinal issues. The LDLN role was seen to be complex and impacted on three key areas: (i) clinical patient care; (ii) education and practice development; and (iii) strategic organisational developments. Specific patient outcomes were linked to issues relating to capacity and consent to treatment, fostering person-centred adjustments to care, augmenting communication and the liaison nurses acting as positive role models and ambassadors for people with ID.The LDLN Services were valued by stakeholders by achieving person-centred outcomes. With their expert knowledge and skills, the liaison nurses had an important role in developing effective systems and processes within general hospital settings. The outcomes highlight the importance of supporting and promoting LDLN Services and the challenges in delivering the multifaceted elements of the role. There is a need to take account of the complex and multidimensional nature of the LDLN role and the possible tensions between achieving clinical outcomes, education and practice developments and organisational strategic initiatives.

Research into specific illnesses and the development of new treatments may only become possible as new technologies become available. When used for research, such technologies may best be described as 'intrusive', in that they require a considerable willingness and commitment on the part of the participants. This has increasingly been the case for brain disorders and illnesses where novel neuroimaging techniques, often combined with clinical and psychological assessments, have the potential to result in new understanding. People with intellectual disabilities (ID) have a history of under-representation as participants in research using such technologies and are therefore at risk of not receiving equal access to state-of-the-art treatments. We propose that 'intrusive' biomedical research is both possible and ethical in ID, and explore some of the methodological challenges by reference to a recent proof of principle study that used a relatively new ligand-based brain scanning technique in a group of volunteers with Down's syndrome.Five overlapping stages of the study methodology were identified and evaluated for their acceptability to volunteers with mild to moderate ID through discussion, reflection, and analysis of structured feedback in the context of key policy documents, ethical guidelines and relevant legislation.Identification of key ethical and methodological challenges from reflective practice and participant feedback facilitated the emergence of strategies that permitted continual refinement of the study design. Important areas considered included (1) being clear about the purpose and scientific justification for the study; (2) reconciling the potential risks and benefits with relevant ethical guidelines and legislation; (3) identifying and implementing effective recruitment strategies; (4) optimising and assessing capacity to consent; and (5) making the 'intrusive' procedures as acceptable as possible to people with ID.We were able to demonstrate that a proof of principle study incorporating a novel brain scanning technique in a group of volunteers with ID was feasible, safe and well tolerated, despite the vulnerabilities of the study cohort and the intrusive nature of the research. We consider the study within an ethical and historical discourse about the principles that define current 'best practice' in ID research and propose a number of key recommendations for making intrusive research acceptable in people with ID.

Applied behaviour analysis (ABA) reduces challenging behaviour in people with intellectual disability. There is interest, however, in whether such interventions reduce carer burden and increase community participation in this group.A 6-month randomised controlled trial was followed by a longer-term naturalistic follow-up of participants. We studied the impact of the challenging behaviour on the carers and on the daily activities of the participants measured by the Carer Uplift and Burden Scale and Guernsey Community Participation and Leisure Assessment respectively.Both community participation and carer burden improved at 6 and 24 months. Burden showed significant reduction in family carers compared with paid carers. There was no significant intervention effect on the variables under consideration.ABA appears to be no more effective than standard care in improving social outcomes in people with intellectual disabilities and challenging behaviour but this requires further examination in a larger trial.

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.

Diagnostics and care for people with intellectual disabilities (ID) and psychiatric disorders need to be improved. This can be done by using assessment instruments to routinely measure the nature and severity of psychiatric symptoms. Up until now, in the Netherlands, assessment measures are seldom used in the psychiatric care for this population. The objective of the present paper is to evaluate the use of the Brief Symptom Inventory (BSI), a widely used standardised questionnaire in general psychiatry, in a well-defined sample of people with borderline intellectual functioning or mild ID diagnosed with one or more psychiatric disorders.A total of 224 psychiatric outpatients with either borderline intellectual functioning or mild ID participated in this study. All participants were new patients of Kristal, Centre for Psychiatry and Intellectual Disability in the Netherlands, in the period between 1 April 2008 and 1 October 2009. All participants were assessed by a multidisciplinary team, including a certified psychiatrist. Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) criteria were applied. The mean total intelligence quotient was measured with the Wechsler Adult Intelligence Scale (WAIS-III). The BSI was administered in an assisted fashion. Utility and psychometric properties of the BSI were investigated. Internal consistency coefficients (Cronbach's alphas) were computed. Bivariate correlations between the sub-scales were computed to assess differentiation between the scales. Mean sub-scale scores were compared between different DSM-IV-TR subgroups to investigate the discriminant abilities of the scales. A confirmatory factor analysis was conducted.The results suggest that the BSI is practically useful. Internal consistencies ranged from 0.70 to 0.96 and thus are considered good to adequate. Sub-scale inter-correlations showed there is a degree of differentiation between the sub-scales. Discriminant validity was shown for the sub-scales depression, anxiety and phobic anxiety. Confirmatory factor analysis showed that the underlying structure of the BSI could be described by the same nine-factor model as reported in previous studies.As a result of the psychometric properties illustrated, this study supports the use of the BSI as a screener for psychopathology and a general outcome measure in people with ID.

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.

This article poses the question, 'Who is the expert?' in relation to people with intellectual disabilities. It begins with an exploration of what it means to assert moral authority in relation to people with IDs, and makes the argument that 'experts' who draw moral boundaries, define conceptions of the 'good' and quality of life for people must consider how to occupy this position responsibly. It then considers a second form of authority - epistemic authority - and explores the moral responsibility that accompanies the practice of putting forth knowledge claims about ID. This involves acknowledging three potential problems: distancing, oppression and dehumanization. The article concludes with questions that point towards greater interdisciplinary dialogue regarding authority, responsibility and the role of the expert.

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.

The gradual abandonment of large residential institutions1 and their replacement by small‐scale services to enable people to live well in the community has probably been the most significant policy development in intellectual disability in the post‐war period (Mansell and Ericsson, 1996). This process of ‘deinstitutionalisation’ is well advanced in Scandinavia, the United States of America, Canada, the United Kingdom, and Australasia. In these countries, the policy debate about whether to provide institutions or community services is largely resolved. The questions that remain are those of implementation and particularly of whether the kinds of supported accommodation that have been provided replicate institutional features and should themselves be reformed. For many other countries, the debate between institutional and community services has never been particularly important because most people with intellectual disabilities live with their families and services to support them are relatively undeveloped. In these countries, it should be possible to develop community‐based services directly, without going through a phase of institutional care. In a third group of countries, the dominant form of service provision remains institutional care and the question of whether and how to replace this remains a matter of debate. For example, many central and eastern European countries provide institutions of very poor quality and currently have proposals to renovate, upgrade and extend them using international funds instead of replacing them with services to support people in the community. The international legal framework sets out the right of disabled people to live in the community. The United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006), which came into force in May 2008, recognises this right through Article 19, which entails the provision of “a range of in‐home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.” The Convention obliges states to develop community living that will replace institutional care through a process of ‘progressive realisation’. This requires states to take measures to the maximum of their available resources with a view to achieving progressively the full realisation of the rights involved. They must, therefore, move in the direction of realising the rights of disabled people but they are allowed to do so at a rate determined partly by the resources available to them. Good information is central to this process of reform and service development. People making decisions about the pace and scope of change, the kind of services needed and the organisation and management of those services are often faced with strongly‐held opinions from proponents of different service models. The purpose of this position statement by the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disability is to set out concisely the evidence comparing institutional to community‐based services and to draw out the main implications for policy‐makers.

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.

Background Very little is known about the neuropsychological correlates of adaptive functioning in people with intellectual disabilities (ID). This study examined whether specific cognitive deficits and demographic variables predicted everyday functioning in adults with ID. Method People with ID (n = 101; ages 19–41 years; mean education = 11 years; 34% women; 54% competitively employed; 41% with mild ID) completed a comprehensive neuropsychological battery grouped into four cognitive domains: processing speed, verbal memory and comprehension, visual perception/constructive function, and executive function. In addition, parents completed an 89-item rating scale developed to assess a wide range of independent living skills. Results Confirmatory factor analysis results confirmed a correlated four-factor model of cognitive function and a unidimensional model of everyday functioning. Furthermore, structural equation modelling results supported the predictive relationship of verbal memory/comprehension and employment status (standardized regression coefficients 0.45, 0.22, P ≤ 0.01 for each) to measures of everyday functioning. The two variables together explained 35% of the variance in everyday functioning. Conclusions Both general cognitive dysfunction and specific verbal memory and comprehension deficit impair daily functions in people with ID. These findings have implications for predictive models of adaptive functioning, and for cognitive rehabilitation and deficit compensation strategies for this group.

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.

Background: Social Policy for people with intellectual disabilities (ID) continues to evolve, but little is known about the lives to which such policies are applied. We aimed to use a prospective follow-up of a British birth cohort to identify children with mild and more severe intellectual impairment, and compare a range of social outcomes in adulthood with people in the rest of the cohort. Methods: We used data from the MRC National Survey for Health and Development. Intellectual impairment was identified by intelligence tests and educational history. Adult outcome measures included employment and social class, education, marriage and children, home ownership, social networks and community use. Results: We identified 111 people with mild intellectual impairment (2.7%) and 23 with severe intellectual impairment (0.6%) at age 15/16. By the age of 43, there were 52 people remaining in the mild impairment group and 14 in the severe impairment group. In adulthood those with intellectual impairment enjoyed contact with friends and family, and joined in informal social activities. Although the mild intellectual impairment group were less likely to attain the following social outcomes than people with normal intellectual functioning, 67% had jobs, 73% were married, 62% had children and 54% owned their own homes. 12% participated in adult education. People with more severe intellectual impairment were less likely to attain these outcomes. Conclusions: These outcomes highlight issues in current social policy and suggest efforts should be directed particularly towards promoting educational opportunities and developing social inclusion for people with ID.

Objectives To compare the nature and prevalence of use of procedures employed to treat and manage challenging behaviours across two approaches to providing community-based supported accommodation for people with intellectual disabilities (ID) and severe challenging behaviour: noncongregate settings where the minority of residents have challenging behaviour, and congregate settings where the majority of residents have challenging behaviour. Setting Community-based supported accommodation for people with ID and challenging behaviour. Design Longitudinal matched groups design. Main outcome measures The nature and prevalence of use of procedures employed to treat and manage challenging behaviours. Observed and reported severity of challenging behaviours. Results Both types of settings were associated with low prevalence of use of behavioural technologies for the reduction of challenging behaviour (less than 15% of participants). In contrast, high proportions of participant received antipsychotic medication in both noncongregate (56%) and congregate (80%) settings. Congregate settings were associated with the increased use of physical restraint as a reactive management strategy, with over half of participants being in receipt of physical restraint by two or more members of staff. Discussion Changes in reported and observed challenging behaviour over a 10-month period were slight. The use of evidence-based behavioural technologies for the reduction of challenging behaviour may have led to better outcomes.

Background Within the scope of a double-blind, placebo-controlled, crossover medication study, the Diagnostic Assessment of the Severely Handicapped-II (DASH-II) was evaluated as a measurement for determining the effectiveness of the medication risperidone in treating the problem behaviour of 21 people with intellectual disabilities (ID). Method Participants’ caregivers completed the DASH-II during the placebo/baseline phase of the study and the maintenance phase of the study, and completed the Aberrant Behavior Checklist – Community (ABC-C) weekly throughout the entire study. The results obtained using the DASH-II were compared to those obtained using the ABC-C, an instrument shown to be well correlated with the DASH-II. Results Results suggest that while the DASH-II and the ABC-C were well correlated during the placebo/baseline phase of the current study, they were not well correlated at completion of the 6-month maintenance phase of the medication trial. Conclusion The DASH-II, while appropriate for assisting in the diagnosis of psychopathology in people with ID, does not appear to monitor changes in problem behaviour as a result of risperidone use as well as the ABC-C. Differences in the frequency of problem behaviour that each measure evaluated and the applicability of using the DASH-II to measure medication effects on problem behaviour are discussed.

Predictions derived from North American formulations of normalization suggest that contemporary care policies for people with intellectual disabilities will have a positive impact on societal perceptions of this group. To test this, adolescents' attitudes towards the community presence of people with disabilities in a normalization-advanced country (Sweden) and a relatively less normalization-advanced country (England) were compared. It was expected that Swedish and English participants would hold equally positive views of people with a non-intellectual disability, whereas English participants would hold less positive views than Swedish participants of people with an intellectual disability. The results gave limited support to this expectation when dimensions of participants' attitudes derived from a factor analysis were analysed. These results are discussed with reference to other factors that may influence attitudes in the two countries. In addition, implications for future research and practice are outlined.

Self-injury by people with intellectual disabilities is a highly problematic and damaging behaviour with profound implications for quality of life. To date, very little detailed descriptive information has been available on the distribution and location of body sites that are injured. This study presents preliminary information on the locations of the self-injury body sites of 29 school-age individuals with developmental and intellectual disabilities who self-injured daily. Teaching staff in school-based special education programmes independently recorded the body locations of where their student's self-injured. Approximately 80% of the reported self-injury was directed disproportionately toward the head and hands. Three-quarters of head-directed self-injury was located on the front of the head, and 83% of hand-directed self-injury was located on the back of the hands. Furthermore, 32% of the body sites toward which self-injury was directed were located on stimulation-produced analgesia body sites. The implications of these findings are discussed in relation to the opioid hypothesis of self-injurious behaviour, and with regard to future research investigating functional diagnostic strategies considering both social and biological variables.

This paper describes the involvement of older people with intellectual disabilities in residential- and community-based activities and programmes. The 446 participants were selected from a national database of people of 55 years of age and over with intellectual disabilities in Australia. The data indicate that participants made infrequent use of public amenities and social and recreational facilities. With the exception of those living with relatives, most had limited contact with family and friends. The discussion draws attention to the need for independence training which will enable the current generation of middle-aged people with an intellectual disability to make decisions and choices about social and community activities.