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Background Physical activity influences health in individuals and within populations. This study explored factors perceived as enabling or inhibiting participation in physical activity by adults with intellectual disability from a health promotion perspective. Method Six focus group interviews were conducted: adults with intellectual disability (1 group, n = 9), direct care workers (1 group, n = 5), group home supervisors (2 groups, n = 9 and n = 6), managers (1 group, n = 4), and parents (1 group, n = 7). Results Three major themes were identified from the focus group interviews: motivation for participation, social support, and political and financial support. Conclusions The most critical issue was the lack of clear policies. Both day training centres and accommodation services would benefit from development of policies related to health-promoting physical activity. Flowing on logically from the development of policy would be much needed training and support of staff. [ABSTRACT FROM AUTHOR]

Quality of life has emerged as an important trend in recent years in the field of intellectual disabilities. At the same time, spending restraints in developed countries have placed strains on services. This paper explores the relationship between these two seemingly opposing trends. Quality of lift, is seen as the goal toward which we strive, and also the degree to which we have achieved that goal. It is proposed that we "reframe" to quality of life. Reframing to quality of life is based on the principle that every person with intellectual disabilities has the right to lead a life of quality, and presents us with three service goals, namely, to maintain or improve 1) good conditions of life, 2) each person's happiness, and 3) the ways people have of becoming enabled to lead fulfilling lives of their own choosing. It is suggested that we need to reframe to quality of life in times of spending restraint to ensure adequate service standards, to use our resources in ways that are most beneficial to people with intellectual disabilities, and to save resources that are not wanted. It is concluded that there can be a mutually beneficial relationship between quality of life and spending restraint, if approached wisely. Containing service costs can be a positive-force if used to help us focus our costs on things that make people's lives better. Improving people's quality of life can lead us to identify the most important places to use our resources, and ways to use them to help people have better lives. [ABSTRACT FROM AUTHOR]

Background Dissatisfaction with the inflexibility of the group home model has led to the growth of supported living that separates housing from support and is thought to have greater potential for better quality of life outcomes. Comparative studies have had mixed findings with some showing few differences, other than greater choice in supported living. By investigating service user experiences of supported living this study aimed to identify how the potential of supported living might be better realised. Method Thirty-four people with intellectual disability participated in 7 focus group interviews and 6 people in an individual interview. Data were analysed using grounded theory methods. Results Although participants experienced greater choice and control over their everyday lives, they did not feel they controlled the way support was provided and experienced restrictions on lifestyle associated with low income. Despite their use of community places and varied social connections to family, friends, and acquaintances, most experienced loneliness. Conclusions If the potential of supported living is to be realised, shortcomings of support arrangements must be addressed by, for example, greater consistency of support worker skills, consumer control over recruitment and rostering, and more skilled support to build friendships and manage difficult relationships. [ABSTRACT FROM AUTHOR]

Background The study reported here was an examination of the reliability of a method for determining acquiescent responding and the capacity to respond to items using a Likert scale response format by adults with an intellectual disability. Method Reliability of the outcomes of these procedures was investigated using a test-retest design. Associations with receptive vocabulary were examined. Results The majority of the participants did not demonstrate acquiescent responding. Individuals' responses to the Likert-type discrimination tasks were consistent, although this varied somewhat depending upon the abstractness of the task. There was some association between receptive language age equivalence scores and respondent performance. Conclusion It is recommended that the pretest protocol (a) be modified to improve its reliability, and (b) this modified version be used with study participants who have an intellectual disability to ascertain the appropriate level of choice to be used for items that use a Likert response format. [ABSTRACT FROM AUTHOR]

In this article the authors discuss data on Australians from a non-English speaking background that have intellectual disabilities. They are critical of a lack of data which has been published on non-English speaking Australians with intellectual disabilities and of the impact that the lack of research has on people with disabilities and on Australian government policy on disabilities.

Background The Six-Minute Walk Test (6MWT) has been used with clinical and healthy populations to assess functional capacity and cardiovascular fitness. The aim of this study was to determine the test-retest reliability of a modified-6MWT as well as concurrent validity of walk distance with peak oxygen uptake (VO2 peak). Method Participants were 13 adults (males = 7) with intellectual disability aged 18-44 years recruited from Special Olympics, and with no medical contraindications to exercise. The 6MWT was modified to include familiarisation, a 1:1 pacer, and encouragement every 15 s. Each participant performed the graded maximal treadmill test and the modified-6MWT twice. Results Test-retest reliability of the modified-6MWT was ICC = .98, and linear regression revealed that the modified- 6MWT distance was significantly related to VO2 peak ( R = .84, p < .001). Conclusions The modified-6MWT is easy to administer and score and shows acceptable validity and excellent reliability for assessing cardiovascular fitness in adults with intellectual disability. [ABSTRACT FROM AUTHOR]

Background Active support is an effective intervention to support engagement of residents with intellectual disability in group homes. This survey explored resident characteristics of the people supported by organisations implementing active support, the provision of active support, its procedures and systems, and resident engagement in meaningful activity and relationships. Method Information was collected through questionnaires and direct observation of 33 group homes from 6 organisations in Victoria, Australia, with a 5-10-year history of implementing active support. Results Residents with lower support needs were engaged with little staff contact or assistance. Use of active support systems and structures was mixed. Only one organisation consistently provided good active support. Conclusions Administrative systems and structures are not sufficient to change staff interaction and thus resident experience. Shared supported accommodation services may represent an inefficient use of resources for more able residents, as staff resources are not maximised to support for resident engagement. [ABSTRACT FROM AUTHOR]

Background: Constipation can lead to serious health issues and death. This systematic review summarises international research pertaining to the prevalence of constipation in people with intellectual disability. Method: Studies published from 1990 to January 2016 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests, and cross-citations. Studies were reviewed narratively. Results: 31 studies were identified. Constipation rates of 50% or more were reported in 14 studies; 21 studies reported rates over 33%. Based on the most representative study, over 25% of people with intellectual disability received a repeat prescription for laxatives in one year, compared to 0.1% of people without intellectual disability. Constipation was more common in those with cerebral palsy and profound intellectual disability, and associated with immobility but not age. Conclusion: Constipation is a significant issue for people with intellectual disability across the life course and should be actively considered as a diagnosis in this population. [ABSTRACT FROM AUTHOR]

Background: Australian publicly funded mental health services play a significant role in the assessment and management of mental illness for people with intellectual disability. However, there is limited knowledge on their preparedness to meet the needs of this population. Method: Public mental health professionals (n=566) completed an online survey that explored their attitudes, confidence, and training needs in the area of intellectual disability mental health. Descriptive analyses were undertaken. Results: Participants agreed that people with intellectual disability have the right to receive good mental health care, and have the same access to their service. They viewed treating them as part of their role, but given the resources available it was not possible to provide comprehensive care. Participants reported low confidence in key clinical areas and insufficient training. Conclusions: A comprehensive workforce development strategy is required to facilitate the engagement and capacity of public mental health professionals in this area. [ABSTRACT FROM AUTHOR]

Background: The increased longevity of individuals with intellectual disability means that ageing parents often play an extended caregiving role into late life. This systematic review evaluates qualitative evidence on futures planning among older parents whose adult children live either in the family home or out-of-home. Method: Electronic databases were searched for studies published between 2000 and 2015. Studies that met the inclusion criteria were analysed using the McMaster Critical Review Form for Qualitative Studies. Results: Of 14 articles reviewed, quality was mixed. Three over-arching themes emerged: (1) external barriers to planning involving reservations about available services; (2) internal barriers preventing parents from planning such as mutual dependency and sense of helplessness; and (3) existence of diverse “plans” and ways of managing the future. Conclusions: Parents are aware of the need to make plans or at the very least have preferences for what they would like to occur. However, a range of external and internal factors pose as barriers to this process. [ABSTRACT FROM AUTHOR]

Background: Social inclusion is a vital domain in quality of life and is enhanced through recreational programs. People with intellectual disability have been provided with fewer opportunities to participate in these groups, thus hindering social inclusion. Method: Five databases (CINAHL, Ovid, ProQuest, ScienceDirect, and Wiley Online Library) were electronically searched and narrowed using inclusion/exclusion criteria. The methodological quality was assessed using standard quality assessment criteria. Results: Out of 135 retrieved results, 12 articles were included. Data were predominantly collected using questionnaires, scales, and interviews. Ages of the people with intellectual disability ranged from 5 to 65 years, and the sample size ranged from 30 to 2,556 persons. Four key themes became apparent in the literature: (1) the impact of physical and social independence, (2) the amount of social interaction and participation, (3) the impact of culture and attitudes, and (4) the outcomes of social inclusion. Conclusions: Social inclusion and participation in leisure activities for people with intellectual disability increase with greater functional independence and positive community attitudes. This participation results in positive outcomes. People with an intellectual disability participate less in recreational programs. Further research is needed regarding the experience from the person’s point of view. [ABSTRACT FROM AUTHOR]

Background: Examining the data collection practices implemented by postsecondary education programs for students with intellectual and developmental disability represents the first step in documenting student progress, making programmatic data-based decisions, and evaluating the overall program effectiveness in preparing students for competitive employment. Method: We administered a survey to a national sample of directors and coordinators (N = 52) of postsecondary education programs across the United States, who indicated that they collected data to gather information on student employment-related aspects and program effectiveness. Results: Results suggest that a large number of programs collect employment data during student enrolment in the program, at graduation, and postgraduation, and make data-based decisions. Conclusions: A wide variability exists in the type of data collection practices implemented by postsecondary education programs for students with intellectual and developmental disability in the United States. We discuss implications for future research and practice. [ABSTRACT FROM AUTHOR]

Background: This study focused on attitudes of workers and family members towards self-determination of individuals with intellectual disability. First, we compare their self-determination attitudes. Second, we test the link from mutual communication (workers and family members perceive that the other party openly dialogues about self-determination) to individual attitudes. Finally, we examine the relationship between mutual communication and affinity in attitudes. Method: We conducted a survey study with 111 organisations (914 workers and 845 family members). Results: Workers have more positive attitudes than family members. In addition, high mutual communication was associated with individual positive attitudes towards self-determination and shared attitudes between workers and family members. Conclusions: When both workers and family members perceive that the other party is accessible and willing to engage in open dialogue about self-determination issues, their attitudes converge. [ABSTRACT FROM AUTHOR]

Background: The aim of this systematic review was to identify and critically appraise empirical research regarding attachment theory among adults with an intellectual disability. Method: A systematic search was carried out in Psycinfo and CINHAL databases. Only five studies met selection criteria. Results: Three main findings were identified: (1) there is a scarcity of empirical research regarding attachment concepts among adults with ID, related to a lack of established measures among this population; (2) there is some evidence that insecure attachment among adults with ID is associated with adverse early life experiences and current mental health difficulties; and (3) there is conflicting evidence that attachment behaviours may present as challenging to supporters. Conclusions: Further research seeking valid and reliable measures is needed with greater numbers of participants with diverse levels of ID. [ABSTRACT FROM AUTHOR]

Background: Despite existing literature identifying the organisational drivers and constraints of employing people with disability, little research has explored how organisations embed disability-inclusive recruitment practices to facilitate ongoing employment opportunities for people with intellectual disability (ID). Method: An embedded case study methodology was used to explore how supervisors and co-workers within a large Australian retail organisation legitimise disability recruitment practices for people with ID and how different operating environments can influence ongoing employment opportunities. Results: Future employment opportunities for people with ID were limited by centralised recruitment process, the availability of suitable roles, and productivity and efficiency demands of the local operating environment, despite the presence of organisational diversity strategies supporting disability employment. Conclusions: The future employability of people with ID is influenced by technological changes to work environments and an increasing focus on efficiency. Future research should address innovative task modifications to enhance employment opportunities for people with ID. [ABSTRACT FROM AUTHOR]

Background: There is limited research documenting the health and/or psychological services accessed by adults with rare genetic syndromes who engage in challenging behaviour. The study documented service receipt and associations with person characteristics. Method: Thirty-two parents of adults with rare genetic syndromes completed an adapted version of the Client Service Receipt Inventory. Access to services for general health and challenging behaviour in the last six months were documented. Person characteristics measured were: adaptive behaviour, autism spectrum disorder characteristics, impulsivity and overactivity. Results: Over half of adults who engaged in challenging behaviour did not receive professional input for behaviours. No association was found between the degree of challenging behaviour and service receipt for challenging behaviour. Total activity score (impulsivity and overactivity) was positively associated, and adaptive ability negatively associated, with accessing professionals. Conclusions: Service receipt is not appropriately linked to needs. Further research should examine factors that affect service access including individual characteristics and service experience. [ABSTRACT FROM AUTHOR]

Background: People with intellectual and developmental disabilities (IDD) may be at risk for medication-related problems due to complex medication regimens. The objective of this study was to determine the medication regimen complexity of adults with IDD. Methods: This retrospective study compared the Medication Regimen Complexity Index (MRCI) scores and number of medications of patients with IDD to a group without IDD (GenMed group), as well as a subanalysis between type of IDD. Results: The MRCI score of the IDD group (29.0 + 8.1, n = 200) was significantly higher than that of the GenMed group (16.7 ± 12.0, n = 200), p < .001. IDD patients had significantly more medications (11.2 ± 6.5) compared with the GenMed group (7.4 ± 5.1), p < .001. There were no significant differences between the number of medications prescribed or the MRCI scores between types of IDD. Conclusion: Clinicians must be aware that patients who have IDD have more complex medication regimens and higher potential for medication-related problems. [ABSTRACT FROM AUTHOR]

Background: Researchers contend that religious and spiritual communities may provide a conduit to friendship for people with IDD. This research explored the interface between social networks and spirituality for individuals with IDD living in either a faith or non-faith based service. Method: A mixed-methods approach was used including semi-structured interviews, the Social Network Guide and the Spiritual Belief Inventory-15R with individuals with IDD (or staff members who provided their opinions of what individuals who lacked capacity to consent would say if they had capacity). These findings were corroborated with extensive field notes generated from participant observation. Results: The faith-based group had a higher network size (m = 78) compared to the non-faith based group (m = 44). Those with larger social networks also reported higher SBI-15R scores. Conclusion: Findings highlight the possible role of social, religious and spiritual activities for expanding individuals’ social networks. [ABSTRACT FROM AUTHOR]

Background: Supported living is perceived as more flexible than group homes for people with intellectual disability. This study identified costs and factors associated with quality of life (QOL) in supported living and compared this with group homes. Method: Thirty-one residents in supported living participated in a survey incorporating measures of service user characteristics and QOL. Participants in supported living were compared to a sample of 397 people in 96 group homes, and QOL outcomes compared for a matched sample of 29 people in supported living and group homes. Results: QOL differed little, supported living was cheaper, and 30-35% of both groups had similar support needs. Being younger, having autism, better health, family support, and participation in structured activities were associated with better outcomes in supported living. Conclusions: Supported living holds potential for group home residents, but greater support is required in domains such as health and interpersonal relationships. [ABSTRACT FROM AUTHOR]

Background Little is known about the nature and reactions to sexual abuse of children with intellectual disability (ID). The aim was to fill this gap.Method Official reports of sexual abuse of children with ID in state care were examined (N = 128) and compared with children without ID (N = 48).Results Clear signs of penetration or genital touching by male (adolescent) peers or (step/foster)fathers were found in most ID reports. Victims often received residential care and disclosed themselves. Type of perpetrator seemed to affect the nature and reaction to the abuse. Cases of children with and without ID seemed to differ in location and reports to police.Conclusions Screening of (foster)homes seems crucial. Residential facilities should find a balance between independence of children and protection. Care providers should be trained in addressing sexual issues and sexual education, accounting for different types of perpetrators (peers/adults). Uniform reporting guidelines are needed. [ABSTRACT FROM AUTHOR]

Background The goal of this study was to examine the relationship between drinking motives and interpretation bias (interpreting ambiguous stimuli in an alcohol-related way) in problematic drinkers with and without mild to borderline intellectual disability (MBID).Method Participants (N = 178) were divided into 4 groups based on severity of alcohol use-related problems and full-scale IQ. They completed a word-association task and the Drinking Motives Questionnaire Revised (DMQ-R).Results Problematic drinkers showed an interpretation bias towards alcohol. Participants with MBID had a relatively strong interpretation bias. The DMQ-R coping motive predicted the strength of the bias in negative scenarios, whereas the DMQ-R coping and social motives predicted the strength of the bias in positive scenarios.Conclusions The activation of this bias might depend on individual differences in drinking motives, which provides implications for the assessment and treatment of problematic alcohol use in individuals with and without MBID. [ABSTRACT FROM AUTHOR]

Background Studies incorporating staff-rated or observational measures of practice leadership have shown that where practice leadership is stronger, active support is better implemented. The study aim was to compare measures of practice leadership used in previous research to determine the extent of their correspondence.Method A subset of data from a longitudinal study regarding 29 front-line managers working across 36 supported accommodation services in Australia was used. An observed measure of practice leadership, based on an interview and observation of a front-line manager, was compared with ratings of practice leadership completed by staff. The quality of active support was rated after a 2-hour structured observation.Results Correlations between staff-rated and observed measures were nonsignificant. Only the observed measure was correlated with the quality of active support.Conclusions This study provides evidence to support using an observational measure of practice leadership rather than reliance on staff ratings. [ABSTRACT FROM AUTHOR]

Background This study investigates whether parents, professionals, and university students have different sexual attitudes towards men versus women with intellectual disability (ID) and which factors are related to such attitudes among these three groups.Method A self-administered survey using the ASQ-ID questionnaire was implemented, and 130 parents, 173 professionals, and 645 university students completed it.Results University students showed more positive attitudes than parents and professionals. Parents were more likely to have a positive perception of men with ID than of women with ID with regard to “parenting.” Whether they were parents, professionals, or university students was not correlated with their attitudes; instead, their attitudes were associated with participants' age, education, and religion.Conclusions Awareness of sexual rights related to people with ID, especially women with ID, needs to be discussed among parents and professionals, particularly those in old age, with a low level of education, and those who follow the Buddhist religion. [ABSTRACT FROM AUTHOR]

Background Challenging behaviours are frequently shown by children with an intellectual disability. This study documents service use within this population and explores its relationship with challenging behaviours and child and parent characteristics.Method Forty-nine mothers of young children with an intellectual disability or global developmental delay completed questionnaires focusing on child behaviour, parental mental health, and service use.Results Maternal mental health was not associated with services accessed. Cost of services accessed differed by topography of challenging behaviour for destruction of the environment or aggression. No differences were noted for self-injurious behaviour.Conclusion In this small study, topography of challenging behaviour impacts on the frequency and/or duration (and therefore cost) of community-based health care accessed. Behaviours that have external impact, such as aggression and destruction of the environment, are associated with a higher cost of services used, a pattern not noted for behaviours that had less external impact (e.g., self-injurious behaviour). [ABSTRACT FROM AUTHOR]

Background: This meta-analysis focused on the teaching of skills to individuals with intellectual disability (ID) to maximise independence increase the likelihood of full participation in all aspects of life, economic self-sufficiency, and independent living. Visual activity schedules (VAS) is an intervention with a growing evidence base that focuses on developing independence. Methods: We conducted a meta-analysis of VAS effects on independence skills of individuals with ID. Thirteen single-case design studies met the meta-analytic inclusion criteria, including evidence of a functional relationship via visual analysis. For each graph, three effect size metrics were calculated. The overall effect sizes were calculated with a random effect models and potential influence of moderators with meta-analytic regression models. Results: Results suggest that VAS has a meaningful impact on increasing independent skills for individuals with ID with type of instruction the only moderator. Conclusions: The results suggest all modes of VAS are likely to yield positive effects across age groups, settings, and skills. [ABSTRACT FROM AUTHOR]

Background: HIV among individuals with intellectual and developmental disabilities (IDD) is rarely studied. This scoping review examined the HIV prevalence, health service use, prevention and risk behaviours among individuals with IDD. Method: Journal articles, book chapters and theses written in English and published from 1991 to 2017 in four academic databases (PubMed, PsycINFO, CINAHL and Web of Science) were eligible for inclusion. Results: From 1636 unique records, 32 documents were included in this review. They contained limited information on HIV prevalence and health service use by individuals with IDD and HIV. Most studies identified a poor understanding of HIV and high-risk behaviours, such as inconsistent condom use, among individuals with IDD. While HIV education programs were effective for this population, no studies identified educational interventions for their service providers. Conclusion: There is a need for educational programs and policies on HIV for both service providers and individuals with IDD. [ABSTRACT FROM AUTHOR]

Background: General anaesthesia (GA) remains a vital modality to facilitate dental treatment for patients with special needs but there is limited literature to describe the types of patients requiring this form of care and the treatment they receive. Method: A cross-sectional clinical audit was conducted of patients treated under GA at the Day Surgery Unit of the Royal Dental Hospital of Melbourne during August 2015. Results: The majority of patients had an intellectual disability and were referred due to their inability to tolerate conventional dental treatment. These patients demonstrated high levels of treatment need requiring an average of two fillings and six extractions. Conclusions: Although these results demonstrate the value of GA in treating patients with intellectual disabilities, the level of treatment need identified raises concerns about current approaches to oral health for this cohort. Greater efforts are required towards preventive oral care for patients with special needs. [ABSTRACT FROM AUTHOR]

Background: The prevalence of abdominal obesity (AO) is high in individuals with intellectual disability (ID). The aim of this study was to assess the prevalence of hypertension (HPT) in students with ID with different distributions of adipose tissue. Method: Study involved 568 participants with ID. AO was assessed on the basis of waist circumference (WC) measurements. Results: The risk of HPT was more than threefold higher in individuals with AO (OR = 3.38) than in the subjects with normal WC. Correlation between the prevalence of AO and HPT was observed in girls and individuals with mild levels of ID (OR = 6.07 and 7.67 respectively). The prevalence of HPT increases sharply in girls whose WC is greater than or equal to the 90 percentile, and in boys when it exceeds the 75th percentile. Conclusion: An association between WC and HPT was observed in abdominally obese students with ID. [ABSTRACT FROM AUTHOR]

Background: This study examined whether a sensory adapted dental environment (SADE) diminished anxiety and agitation in adults with intellectual and developmental disability (IDD) when compared to a routine dental environment (RDE). Method: Agitated behaviours (frequency and duration) were video-taped and anxiety-related physiological measures recorded (heart rate [HR] and blood pressure [BP]) during dental treatment in RDE and 6 months later in SADE. An ICC2,k assessed the reliability of subject behaviours. The impact of treatment condition was compared with paired t-tests and ANCOVAs. Results: 41 participants, 22 males, aged 47.9 (14.2), were examined; 61% were diagnosed with profound IDD. SADE reduced frequency and duration of agitated behaviours and reduced physiological evidence of agitation (HR and BP) over RDE with p <.004. Conclusion: This research demonstrated a decrease in frequency and duration of agitated behaviours and smaller changes in HR and BP when dental care is provided in a SADE. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability (ID) experience poor oral health and are at greater risk of dental decay and periodontal diseases. This impacts on their general health and wellbeing. This review summarises the research literature about oral health status and contributing factors to poor oral health Method: We conducted a literature review using "intellectual disability" and "oral health" as our two core areas of focus. Results: People with ID had poorer oral health, greater numbers of tooth extractions, more caries, fewer fillings, greater gingival inflammation, greater rates of endentulism, and had less preventative dentistry and poorer access to services when compared to the general population. Anxiety during dental procedures was a key issue for females with ID. Conclusions: Further research is needed to identify, pilot and test appropriate and effective interventions that can reduce this preventable health disparity. The design of an ID-specific dental anxiety scale is another priority. [ABSTRACT FROM AUTHOR]

Background: Very few studies have evaluated the performance of transition to work (TTW) service providers after the TTW program was implemented in New South Wales, Australia since 2005. This paper examines employment outcomes achieved by 35 TTW service providers in Sydney. Method: Descriptive statistics and chi-square were used to analyse the TTW outcome data. Results: We found that (a) there was a constant growth in the number of TTW program entrants and an overall increase in the employment rate of TTW clients; (b) many TTW service providers in Sydney served fewer than four clients annually on average; and (c) huge differences were evident in the employment outcome performance of individual TTW service providers. Conclusion: The TTW programme in Sydney allowed more school leavers to achieve employment. However, further research is needed to examine the associations between TTW program features and different employment outcomes to build an optimal TTW program. [ABSTRACT FROM AUTHOR]

Background: The Human Papillomavirus (HPV) vaccine is offered in Australia to all males and females at 12 to 13 years. In 2015 the national HPV coverage was 77.4% for females and 66.4% for males. There is no Australian coverage data for the subgroup of adolescents with disabilities. Method: We reviewed the HPV vaccine status of all 14 year-old adolescents who attended a developmental medicine clinic in a tertiary hospital in Melbourne during 2014. Motor function and intellectual impairment were also recorded. Results: Of the 72 adolescents in the audit, only 39.5% of males and 44.1% of females were fully immunised against HPV. Those with intellectual impairment had particularly low levels of HPV immunisation (16/47 (34%)). Conclusion: In this study HPV vaccine coverage in adolescents with developmental disabilities was found to be well below national levels. Larger studies of HPV uptake and exploration of the barriers to immunisation in this population are urgently needed. [ABSTRACT FROM AUTHOR]

Background: Fragile X syndrome (FXS) is the most common cause of inherited intellectual disability among men. This syndrome is frequently underdiagnosed in adults. The aim of this study was to develop and validate a French translation of the screening checklist Fragiele-X screeningslijst. Method: The validation sample for the translated checklist included 22 pairs of men between the ages of 18 and 52, matched by age and degree of intellectual impairment. Results: The translated checklist achieved coefficients of 0.92 for internal consistency, 0.90 for test-retest reliability and 0.65 for inter-rater reliability. These psychometric properties are commensurate with those of the original checklist. Conclusion: Therefore, the translated checklist developed in this study can be considered a valid screening instrument for the detection of FXS in men with intellectual disabilities. Abbreviations: FXS: fragile X syndrome; FMR1: fragile X mental retardation 1 (gene) [ABSTRACT FROM AUTHOR]

Background Sex education should include social skills, such as those that allow individuals to relate, socialise, and communicate with others, to assist people with intellectual disability ((ID)) to live life fully in the community. Objectives We administered and investigated the effects of a program involving 8 interactive sex education sessions that were aimed at improving the social skills of people with ID. Methods Participants were 17 people with ID and 17 control group participants in Japan. The evaluation was conducted with a questionnaire based on KiSS-18 ((Kikuchi's Scale of Social Skills: 18 items; Kikuchi, 2007)). Results The score of KiSS-18 in the experimental group was 55.4  ±±  12.9 before the administration of the program, as compared to a mean of 61.8  ±±  13.2 after the program. A significant increase was identified. There was no significant difference between the first and second average score in the control group. Conclusion The sex education program involving social skills training for people with ID had significant effects. [ABSTRACT FROM AUTHOR]

Background In Sweden, a process involving the deinstitutionalisation of services and the establishment of community-based settings for people with intellectual disability has meant changes in meal arrangements. In the present study, we focus on the social arrangements of meals in community-based settings. Method Participant observations were used to study the meals as social events for 32 participants, 9 of whom lived in supported living and 23 in group homes. Results Breakfast and dinner were often eaten alone, while lunch at the daily activity centre and the food eaten between meals (snacks) were mostly shared with other people. Meals for participants in supported living were seldom social, and meals for participants in the group homes often hierarchical. Conclusion The participants were often limited in choosing their company at meals, which typically consisted of other people with intellectual disability and staff. If they made such choices, they were dependent upon staff support to realise them. [ABSTRACT FROM AUTHOR]

Background Statistics are critical in holding governments accountable for the well-being of citizens with disability. International initiatives are underway to improve the quality of disability statistics, but meaningful ID data is exceptionally rare. Method The status of ID data was evaluated in a review of 12 national statistical systems. Recurring data collection by national ministries was identified and the availability of measures of poverty, exclusion, and disadvantage was assessed. Results A total of 131 recurring systems coordinated by 50 different ministries were identified. The majority included general disability but less than 25% of the systems screened ID. Of these, few provided policy-relevant data. Conclusions The scope of ID data was dismal at best, though a significant statistical infrastructure exists for the integration of ID data. Advocacy will be necessary. There is no optimal form of data monitoring, and decisions regarding priorities in purpose, targeted audiences, and the goals for surveillance must be resolved. [ABSTRACT FROM AUTHOR]

Background Little is known about child disability and dynamic aspects of poverty. Method Analysis of data collected over a 12-month period for families (a) supporting a child with intellectual disability ( n = 370), (b) supporting a child with other disability ( n = 1,418), and (c) supporting a child with no disability ( n = 7,215). Results When compared to families not supporting a child with disability, families supporting a child with intellectual disability were (a) more likely to be poor, (b) more likely to become poor, (c) less likely to escape from being poor. Half of poverty transitions were associated with identifiable potential trigger events. Conclusions There were few differences between families supporting or not supporting a child with disability with regard to either levels of exposure to potential trigger events or to the strength of the association between exposure and poverty transitions. [ABSTRACT FROM AUTHOR]

Background Often communication training has been directed at the communication practices of staff members working with people with multiple learning disabilities. To date, the thinking habits of staff members, which also influence interactions, have not been addressed. We identified the issues staff members perceived as important for their development as communication partners after participating in a communication training program. Method Six key staff members participated in semistructured interviews that explored the insights they had gained during participation in the Finnish communication training program OIVA. Results Participating staff members identified issues relating to the communication practices and thinking habits they had acquired during the training. Both communication practices and thinking habits were important for the staff members' development as communication partners. Conclusions The findings of this study suggest that it is important to give staff members the opportunity to learn new practices and to explore the thinking that underpins the actions they perform during communication training. [ABSTRACT FROM AUTHOR]

Background This study reports on the hospitalisation experiences of older adults with intellectual disability living in group homes. Methods Grounded dimensional analysis was used to guide data collection and analysis. Group home residents were tracked prospectively over a 3-year period. Interviews were conducted with family, group home, and aged care staff and managers, and some residents. Results Findings highlighted the difficulty people with intellectual disability experience in hospital settings. Findings revealed extensive strategies undertaken by family members and group home staff to improve hospital experiences. Ageing of the family members and staffing implications for group homes complicated efforts to improve hospital experiences. Conclusions The current absence of systems to accommodate the special needs of people with intellectual disability in hospital settings has significant consequences for group homes, family members, hospital staff, and residents. Most hospital systems appear to be poorly designed to care for this vulnerable population. [ABSTRACT FROM AUTHOR]

Background The attitudes of support staff and others in the community towards the sexuality of individuals with an intellectual disability (ID) have the potential to influence opportunities for normalised life experiences in the area of sexuality. Method A sample of 169 disability support staff and 50 employees from leisure and service industries completed the Attitudes to Sexuality Questionnaires (Individuals with an Intellectual Disability [ASQ–ID], and Individuals from the General Population [ASQ–GP]). Results Support staff and leisure workers reported generally positive attitudes towards the sexuality of individuals with an ID, but men were seen as having less self-control than women. Support staff were more cautious in their views about parenting, and both groups considered a lower level of sexual freedom to be desirable for women with an ID compared to women who are developing typically. Conclusions Attitudes of both groups are generally quite positive in relation to ID and sexuality. [ABSTRACT FROM AUTHOR]

Background Services employing staff to support people with disability usually provide training in a range of areas including communication and managing challenging behaviour. Given that such training can be costly and time-consuming, it is important to evaluate the evidence presented in support of such programs. Efficacy in clinical practice is measured using evidence-based practice. However, there is currently no model that is widely used to compare and evaluate training programs despite the large number of training programs reported each year. Method Six studies published in the last decade that reported the outcomes of communication-based training and six that reported on the outcomes of challenging behaviour training were evaluated using the 4-level Kirkpatrick model. Results Comparison of the levels of evidence is made for these 12 studies. Conclusion The Kirkpatrick model provides one technique for appraisal of the evidence for any reported training program and could be used to evaluate whether a training program is likely to meet the needs and requirements of both the organisation implementing the training and the staff who will participate. [ABSTRACT FROM AUTHOR]

Background Active support (AS) has been shown to increase the amount of time that residents in shared residential settings are involved in purposeful activities. The organisational processes required to implement AS have been less well researched. Method Staff in community houses answered questions about the occurrence of organisational activities and processes thought to assist AS implementation (e.g., training and teamwork), their understanding of engagement, and their experience of changes in staff practice consistent with AS (including implementation problems). Non-house-based managers were also interviewed about their role in AS implementation. Results Reported occurrence of organisational activities and processes (e.g., training and teamwork) and understanding of engagement were associated with more reports of changes in staff practice and fewer staff reports of implementation problems. Staff reports on the role of non-house-based managers were not associated with reports of changes in staff practice or with reports of fewer AS implementation problems. Non-house-based managers' reports overestimated their role in AS implementation when compared with reports from house-based staff groups. Conclusion While there are limitations in the research design (including the reliance on staff reports), the findings support the importance of wider organisational factors (beyond training programs for direct support staff) as integral to the implementation of AS. There is a need for further research on AS implementation. [ABSTRACT FROM AUTHOR]

Background The aim of this study was to evaluate active support (AS) training and to investigate changes to perceived engagement in domestic tasks, opportunities for choice, frequency of challenging behaviour, and level of support needs. Method Participants were 12 adults with ID aged 27-57 years (M = 37 years) residing in three group homes, and their support workers. The support workers completed assessments on three occasions (at baseline, post-training, and at follow-up). Results Residents' engagement in domestic tasks increased over time, and overall choice increased, although perceived choice in two life domains initially increased, but decreased to baseline levels at follow-up. Residents exhibited an overall decrease in anxiety, self-absorbed behaviour, disruptive behaviour, and problem behaviour in general. There was also an overall decrease in perceived support needs for five activity domains, with no change for one domain. Conclusions The results contribute to a growing body of evidence demonstrating favourable outcomes of AS in terms of engagement and challenging behaviour in people with ID. Surprising results are presented for choice and perceived support needs, warranting further investigation. [ABSTRACT FROM AUTHOR]

Background Australian government policy regards people with intellectual disability (ID) as citizens with equal rights, which means that they should have access to the same opportunities as the wider community. Ageing in place is central to aged care policy in Australia for the general population. Method This paper reviews policy to support the provision of similar opportunities to age in place for people with ID, and the reasons for its slow development. Results Due to lifestyle patterns earlier in the life course, many people with ID experience a mid-life disruption to their accommodation, and may live in a group home as they age or may move prematurely to residential aged care. The absence of mechanisms to adjust disability funding as needs change, and the existence of policy that denies residents in group homes access to community-based aged care, forces disability services to "go it alone" to support ageing in place. Conclusion Despite a national priority to improve the interface between the disability and aged care sectors, administrative and funding characteristics continue to obstruct the development of implementation strategies to support ageing in place for people with ID, which remain at the stage of an exploration of the issues. [ABSTRACT FROM AUTHOR]

Background Few case controlled studies have been published on the behavioural phenotype of Angelman syndrome (AS). Little is yet known about preferences in individuals with AS. Method Preferences for water-related items and non-water-related items were assessed in 27 individuals with AS and two matched groups of participants, one with Down syndrome (DS) and the other with non-specific intellectual disabilities (NS), using an adapted Dutch version of the Choice Assessment Scale (Matson et al., 1999). Results Individuals with AS showed a higher preference for water-related items compared to individuals in both comparison groups, substantiating previous reports which have suggested that individuals with AS are fascinated with water. Conclusions Knowledge about preferences in individuals with AS, especially with regard to water-related objects and activities, is important in person-centred planning of daytime activities and training programs for this group. [ABSTRACT FROM AUTHOR]

Background Ring chromosome 7 [r(7)] is a rare cytogenetic aberration, with only 16 cases (including 3 females) reported in the literature to date. This is the first reported case of r(7) from India. Method Clinical and cytogenetic investigations were carried out in an adult female with microcephaly and intellectual disability. Results Ring chromosome 7 was observed in 10% of the metaphases (46,XX,r(7)/46,XX). The clinical findings revealed microcephaly, growth delay, and dark pigmented naevi. Conclusion The mosaicism for a chromosomal anomaly is an under-recognised cause of intellectual disability. [ABSTRACT FROM AUTHOR]

Background This study provides an overview of empirical research on the effectiveness of quality-enhancing interventions for people with profound intellectual and multiple disabilities (PIMD). Method Through computerised searches of the PsycINFO and ERIC databases, and using several search criteria specifically relating to the target group and to the subject of this review, 16 studies were identified. Results The interventions described are targeted at the physical and material well-being, emotional well-being, social interactions, choices, and personal development of individuals with PIMD, but do not address community participation and rights. The majority of the studies report positive effects of the interventions on staff and/or client behaviour. However these effects should be interpreted with caution because of methodological and other considerations. Conclusions Current research gives only limited insight into the effectiveness of quality-enhancing interventions for people with PIMD. To foster evidence-based practice, further studies of larger groups and with more robust designs are warranted. The potential differential effects associated with client characteristics and the context of the implementation should also be considered. [ABSTRACT FROM AUTHOR]

Background The prevalence and consequences of anger and aggression in people with intellectual disability (ID) are of great concern. It is essential that appropriate assessment tools are developed to aid formulation of treatments and to evaluate progress and outcomes. Method This study evaluates the Dundee Provocation Inventory (DPI), a 20-item assessment measure for anger provocation. A group of 114 participants were administered the DPI, and 62 of these were also administered the Novaco Anger Scale (NAS) and NAS Provocation Inventory (NAS-PI), two well-validated measures. Results Preliminary analysis revealed that the DPI correlated significantly with the NAS (r = .57) and NAS-PI (r = .77). The DPI had high internal consistency (α = .91) and moderate to high inter-item and item-to-total score correlations. Factor analysis revealed a 5-factor solution which accounted for 63% of the variance and was most easily interpreted. Conclusion The analysis suggests that the DPI is a suitable tool for assessing anger in people with ID. Further replication of the factor structure would be valuable. [ABSTRACT FROM AUTHOR]

Background Past research has determined that fear of violence is often "irrational" in relation to the actual level of risk presented. This has been found to exacerbate the negative effects of exposure to work-related violence. Aims This study investigates fear of assault in relation to exposure to challenging behaviour. The extent to which a social psychological model of fear of assault can be generalised to care staff working with individuals with intellectual disability (ID) was tested and the validity of the instruments used was assessed. Method A total of 87 care staff took part in a questionnaire-based study carried out in two separate and distinct organisations providing residential services to individuals with ID. In one service, staff exposure to challenging behaviour was high, with many clients having a forensic history, and in the other, staff exposure to challenging behaviour was low. Results According to one measure, care staff exposed to high levels of challenging behaviour were more fearful about work-related violence. However, no difference was found between the groups on the second measure. Regression analyses indicated some support for the generalisability of dimensions of the model of fear of assault in explaining feelings of unsafety. Conclusions This study suggests that fear of assault may be an important factor when trying to understand care staff responses to challenging behaviour. However, the equivocal nature of the results raises questions about the validity of existing methods of assessing this fear. [ABSTRACT FROM AUTHOR]

Background We tested whether social and educational integration combined with training in awareness of disability for secondary school students resulted in more positive, long-lasting attitudes about educational and social inclusion of people with an intellectual disability. Method Attitudes of 259 participants (116 males, 143 females) were assessed by questionnaire. Effects of awareness of disability programs (ADPs) were tested by comparing attitudes of current secondary school students participating in a 3-session or 8-session ADP (n = 67) and past students who had participated in a 10-session ADP 8 years prior to the present study (n = 46), with same-age controls without training (n = 146). Results Students completing 8-session ADPs reported more favourable attitudes than students in the 3-session ADP and peers without training. Past students' attitudes were also highly positive, compared with same-age controls without training. Conclusions ADP programs can promote positive attitudes towards people with an intellectual disability. Such training may have long-term benefits. [ABSTRACT FROM AUTHOR]