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Background: The organization of healthcare for people with intellectual and developmental disabilities (IDD) varies across countries. Each country has developed unique practices embedded in their historical and organizational context. Understanding and sharing these practices across borders facilitates mutual understanding about healthcare needs of people with IDD and facilitates the adoption of effective strategies in other countries. Aim: To provide a synthesis across the country‐specific papers in the JPPID special edition and thereby identify underlying trends, challenges, and best practices in healthcare for people with IDD. Methods: The papers in this special edition, which describe the organization of healthcare for people with IDD in 13 countries, were qualitatively analyzed using thematic content analysis, focusing on general characteristics, history, and context, organization of healthcare for people with IDD, challenges, and best practices. Results: Each paper described a specific national history of evolution of healthcare for people with IDD, but our analysis showed that countries face similar challenges in healthcare for people with IDD. These challenges cover (1) access to healthcare, (2) quality of healthcare, (3) implementation, and (4) visibility of people with IDD. Consequently, people with IDD continue to face significant health disparities. Several best practices have been developed, ranging from making mainstream healthcare more accessible and suitable to providing specialized services, and advocating and raising awareness. Conclusions: This synthesis is the first paper to include perspectives on healthcare for people with IDD across 13 countries. We identified that, despite differences in context, countries face similar challenges in improving healthcare for people with IDD. International collaboration and networking can provide essential tools in reducing health disparities that people with IDD face, starting with the challenges identified in this synthesis. This will require effort to especially include low‐ and middle‐income countries. [ABSTRACT FROM AUTHOR]

Few healthcare providers receive guidance on the unique needs of persons with intellectual and developmental disabilities and mental healthcare needs. Our aim was to develop a tool for health care providers to use as a guide to address the complex needs of this patient population. The development of the Integrated Mental Health Treatment Guidelines for Prescribers in Intellectual and Developmental Disabilities consisted of five steps: focus groups, draft of the guidelines, evaluation of the guidelines, finalization, and dissemination of the guidelines. The focus groups revealed themes in five domains: (1) relationships, communication, and openness; (2) understanding the person, their environment, and culture; (3) importance of an integrated care and wellness approach; (4) consideration of treatment modifications; (5) recommendations from focus group participants regarding the guidelines. These focus groups informed the development of the guidelines. Forty‐three prescribers evaluated the guidelines noting multiple strengths and some recommendations. Based on this feedback the guidelines were modified as needed, finalized, and disseminated. This paper describes the development of the Integrated Mental Health Treatment Guidelines for Prescribers in Intellectual and Developmental Disabilities. An evidence‐informed, easy‐to‐use, web‐based guide with links to best practice resources. These guidelines incorporate integrated health, other mental health approaches, and the input of patients. [ABSTRACT FROM AUTHOR]

This paper presents current information on policy developments, service design, best practices, and approaches to empower the users of health and medical care services for people with intellectual disabilities in Poland. Polish regulations allow systemic support to be provided for all people with disabilities. However, Polish patients with intellectual disabilitiy (PwID) and their caregivers face many barriers. Although a key obstacle is the lack of a standard definition that approaches disability in an interdisciplinary way, PwID are also more likely to experience difficulties in personal communication in medical settings and less likely to encounter specialists prepared to work with this group. There is also a need to pay greater attention to the expectations of PwID. To facilitate a holistic approach to diagnosis and therapy, there needs to be coordination between different specialists, including medical staff, paramedics, psychologists, and teachers. Providing personal communication training for medical personnel, as well as developing dedicated procedures for PwID in primary health care, clinics and hospitals, will improve equal access to health and health literacy for all in Poland. Even so, it is important to respect the autonomy of PwID and the commitment of caregivers. [ABSTRACT FROM AUTHOR]

This paper describes the development of a home‐based occupational therapy intervention program for people with Down syndrome who experience early on‐set dementia causing a decline in their performance skills and increasing care dependency on their informal caregivers. A six‐step methodological process adapted from the Medical Research Council framework for developing and evaluating complex interventions was formulated to develop an evidence‐based occupational therapy program for people with both Down syndrome and dementia and their informal caregivers. The first two steps gathered evidence through systematic reviews of the literature and determined the scope of current occupational therapy practice. The gathered evidence was synthesised in step three to develop a client‐centred occupational therapy intervention program for persons with both Down syndrome and dementia and their informal caregivers. In steps four and five, opinions were sought from occupational therapists working in this area of practice on the content of the developed program and its feasibility within the Australian disability services context. The final testing step can be conducted in the future using a single‐case experimental design study. It is important to use rigorous frameworks and gather comprehensive evidence using multiple methods to develop interventions for small heterogeneous populations. The developed occupational therapy program for persons with both Down syndrome and dementia and their informal caregivers appears feasible to be implemented within the Australian disability services; however, funding limitations imposes barriers for its implementation in clinical practice. [ABSTRACT FROM AUTHOR]

Abstract: There is limited research about learning outcomes for young people with intellectual disabilities (ID) in postschool education (PSE). This is a significant issue as PSE is a strong predictor of successful employment for individuals with ID. Tertiary education programs have been developed in several countries, including Australia. These programs remain rare and available to only a minority of young people. For several years, service organizations in the broader community in Australia and overseas have been developing educational programs particularly in literacy to meet the needs of this age group. However, many of these programs have been developed by practitioners with limited access to evidence‐based practice, leading to difficulties in providing evidence of their effectiveness. This paper reports the findings of a longitudinal study of the effects on literacy learning of an evidence‐based 2‐year postschool literacy program for individuals with ID. All students (n = 191) who completed the program from 1998 to 2013 were assessed for their receptive vocabulary, single word reading, and reading comprehension. These assessments were undertaken at entry to the program, the end of the first year, and on graduation. The quantitative analysis used a growth trajectory model to assess students' progress, accounting for age, disability, gender, maturation, and time. The results provide statistically significant (p < .001) evidence that individual students increased their scores in all of the assessments over time. The authors argue that appropriately designed long‐term PSE programs for literacy learning have the potential to enhance the language and literacy development of young adults with intellectual disabilities. [ABSTRACT FROM AUTHOR]

This paper compares the family quality of life (FQOL) of families with a child with disability in Jewish and Arab communities in Israel. Social, political, and cultural realities have an effect on all members of society. For families with a child with disability there are additional challenges. Being a minority family with a child with a disability adds to the challenges. One hundred fifty-eight Jewish and 105 Arab Israeli caregivers of children with disabilities responded to the Family Quality of Life Survey (FQOLS-2006), which operationalizes FQOL as a construct of six measurement dimensions in nine core family life domains. Overall, Jewish families in Israel reported higher FQOL than Arab families. Although eight of the nine domains were rated highly for Importance, the main outcome measures Attainment and Satisfaction were rated lower for almost all domains. Some domains contributed to overall differences more than others. The patterns also differed for the Jewish and Arab families. It is important for policy and practice to consider the social/political status of families and to consider the possible impact this has on the family of a child with a disability. Further research is needed to develop application models for addressing the needs of minority populations in designing programs into the general service delivery system. [ABSTRACT FROM AUTHOR]

Population aging is expected to have a dramatic impact on the need for services and supports among adults with intellectual and developmental disabilities. The expected size of the population of older adults affected remains unknown. The aims of this paper are to present methods to project the age-structure of the adult population with intellectual and developmental disabilities 10 years into the future, apply those methods to data from Ontario, Canada, and discuss their relative merit. Two methods were used. The first method relies on knowledge of the prevalence of intellectual and developmental disabilities across age groups in a given population and the corresponding census estimates for future years for the same age groups in that population. The second method requires knowledge of the age-structure of the adult population with intellectual and developmental disabilities as well as age-specific mortality rates for this population. This second method was applied using two sets of available mortality rates. Projections of the number of adults with intellectual and developmental disabilities 45-84 years of age over a 10-year period vary depending on the method used. The first method suggests a moderate increase (20.5%) while the second method suggests a small increase (4.1-8.4%) in that age group. It is important to be able to critically examine methods and assumptions used when claims are made about population growth and aging in relation to intellectual and developmental disabilities. Accurate age-specific prevalence data and detailed population-level mortality statistics specific to intellectual and developmental disabilities are required to plan for aging-related services. [ABSTRACT FROM AUTHOR]

Background: Across the world, frailty is part of the guidelines that are being developed in the COVID‐19 pandemic for triaging in crisis situations. The Clinical Frailty Scale (CFS) evaluates the ability to perform daily tasks to identify frail individuals, potentially excluding those from intensive care (IC) treatment. Individuals with intellectual disabilities (ID) experience varying degrees of dependence, distinct from age‐related physical deterioration. Using the CFS for triage in crisis situations could potentially unjustifiably exclude individuals with ID from IC treatment. Our objective was to compare the classification of individuals with ID into different frailty categories based on the CFS and the well‐studied ID‐frailty index and to determine suitability of CFS for evaluation of frailty in individuals with ID during the COVID‐19 pandemic. Methods: This retrospective analysis of the observational healthy aging and intellectual disabilities (HA‐ID) study included 982 individuals with ID of ≥50 years, who were classified according to the CFS and the ID‐frailty index. Results: Of the cohort of 982 older adults with ID, 626 (63.7%) would be classified as moderately frail (CFS score 6), but 92% of this group is not moderately frail according to the ID‐frailty index. Furthermore, 199 (20.3%) would be classified as at least severely frail (CFS score 7–9), but 74.9% of this group is not severely frail according to the ID‐frailty index. Overall, 730 out of 982 (74.9%) individuals would be incorrectly classified by the CFS as too frail to have a good probability of survival. The ID‐frailty index predicts mortality better than the CFS in individuals with ID. Conclusions: Our results show the CFS is not suitable to evaluate frailty in individuals with ID, with potential dramatic consequences for triage and decision‐making during the COVID‐19 pandemic. We strongly recommend using the ID‐frailty index when assessing probability of survival for individuals with ID. [ABSTRACT FROM AUTHOR]

Health problems among people with intellectual and developmental disabilities (I/DD) are considered more prevalent than among the general population, but there are very few studies that have described a detailed ear, nose, and throat examination of this group. The purpose of this paper is to provide a set of guidelines that can result in a structured ear, nose, and throat examination, describe one experience with implementing the guidelines for otorhinolaryngological care with a heteroegnous sample of adults with intellectual disability, discuss relevant care principles derived from the experience, and specifically address the issue of cerumen impaction. The subjects, 356 adult residents of two residential care centers for people with I/DD, were examined by four otolaryngologists, assisted by an audiologist/speech-language pathologist, and a nurse. The examinations lasted 8 h over 2 days. Of the residents, 292 (82%) had at least one main finding; impacted cerumen was observed among 54.9% of the examined ears. Of these, 103 residents (206 ears) were examined again after cerumenolytic treatment and cerumen cleared. The authors concluded that there is a need for focused physical examination in order to recognize and treat ear, nose, and throat disorders in this population. Examinations of adults with I/DD are feasible and important in enabling good communication and maintaining general health. [ABSTRACT FROM AUTHOR]

Children with intellectual disability receiving residential support, according to the Swedish Disability Act, need substantial support to cope with everyday life. These children have cognitive and communicative limitations, entailing difficulties for staff in consulting the children regarding their support arrangements. In addition, due to lack of research there are knowledge gaps and uncertainties concerning how staff can provide the children's support. To deliver high qualitative support, research suggests that disability organisations should (1) continuously work with quality improvement, (2) adopt a multi‐dimensional framework that explains human functioning and disability as a basis for understanding individual support needs, and (3) use person‐centred approaches. Based on these principles, this study has applied a realist evaluation to identify enablers and barriers during the implementation of an improvement programme aimed at improving staff's ability to provide support to children living in special residences. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities (ID) experience high levels of psychiatric comorbidity and difficulties accessing services, particularly in rural areas. An Intellectual Disability Mental Health Outreach Clinic was established to provide specialised psychiatric care in rural Australia through telepsychiatry and in‐person assessment. The study aims were to (i) contrast the characteristics of clinic attendees assessed by telepsychiatry or in‐person; (ii) assess the feasibility of care delivery by synchronous videoconference (telepsychiatry) or in‐person; and (iii) assess acceptability to, and experiences of, participating carers (family members, non‐government organisation workers or Community Mental Health Case Managers). An audit of clinical records was conducted of clients reviewed by the Clinic between August 2018 and April 2021. A survey of carers, either employed or family members, evaluated Clinic acceptability and experiences with the Clinic assessment, and as well as perceptions of thoroughness, accessibility, and ease. Of 145 people with ID, 46% were reviewed by telepsychiatry. These 67 telepsychiatry clients were more likely to have milder ID (p < 0.01) and were seen more frequently (p < 0.05) than the 78 clients with in‐person reviews. Results from the carer survey (31.7% response rate, n = 46/145) indicated high overall service acceptability, with telepsychiatry perceived to offer more convenient appointment times (91% agreed vs. 75% of in‐person, p < 0.05). The high uptake of telepsychiatric review indicates that it is feasible and acceptable to carers of people with ID and comorbid mental health concerns. Telepsychiatry is a potential tool to address equity of access to mental health services for people with ID—particularly those from disadvantaged and rural populations. [ABSTRACT FROM AUTHOR]

A 2012 change in Australia's immigration policy saw increased resettlement of refugees with disability, with a large number fleeing political instability in Iraq and Syria. The evidence on service disparities for resettled refugees with disability and their families is sparse. The study aim was to explore, from multiple stakeholder perspectives, the experiences of people with disability from Iraqi and Syrian refugee backgrounds resettled in Australia, with a view to informing future services and supports. Interviews with nine family members of 11 people with disability from Iraqi and Syrian refugee backgrounds and seven practitioners working in refugee specific services. Persons with disability had a range of disabilities including intellectual or developmental, physical and sensory. Interviews were translated from Arabic to English as required and analysed using thematic analysis. Two themes described the practices and service interventions that addressed disparities: (1) Getting the basics right: Refugee specific services played a crucial role during early settlement in ensuring access to medical, health and social care including diagnosis, medication, equipment, housing and financial support. (2) Ongoing access to disability supports: Refugee specific services assisted families with longer‐term supports once immediate needs were met, including accessing services through the National Disability Insurance Scheme. Participants described benefits such as having access to interpreters and Arabic‐speaking staff, demonstrating services' attention to cultural sensitivity and safety, and problems including waiting times, bureaucratic processes and housing needs. Refugee specific services, disability services and health services should collaboratively develop and implement strategies to tackle the intersectional nature of issues resettled refugees with disability and their families encounter in Australia. These should be informed by the experiences of people with disability and family members from refugee backgrounds and privilege holistic practices that avoid reliance on one sector alone to address the complex needs of refugees with disability. [ABSTRACT FROM AUTHOR]

Pain is often unrecognised and untreated in people with ID. In the absence of self‐report, the use of structured behavioural pain assessment tools is best practice for identifying pain in this group. The aim of this research was to explore the utility of the Abbey Pain Scale and The Distress and Discomfort Assessment Tool (DisDAT) for use by residential support workers and family members of adults with severe or profound ID who live in group home settings. Participants were 17 residential support workers and six family members and provided information about 23 adults with severe or profound ID. Participants completed one of the two tools every 2 weeks for 3 months and indicated whether they thought the individual was content, distressed or experiencing pain. In total, 131 completed tools were returned (80 Abbey Pain Scales and 51 DisDATs). The results indicated that higher total pain scores on the Abbey Pain Scale appear to correspond to a report of pain or distress. A range of behaviours from the Abbey Pain Scale were reported to be present when the individuals with ID were reported to be in pain, such as vocalisations and facial expressions, but these and other behaviours were also observed when the individual was reported to be distressed. Similarly, using the DisDAT, there were behaviours that were present when individuals were reported to be experiencing pain which, for the most part, were also reported when individuals were reported to be distressed. Although neither of the tools appeared to distinguish between pain and distress, it is evident that both tools have utility in the assessment of distress. This is a promising finding as it may be that the tools can be used to signal that an individual with severe or profound ID is distressed and that pain is a factor to be considered. [ABSTRACT FROM AUTHOR]

Background: Community services for Swedish people with intellectual disability (ID) are intended to support self‐determination and integrity. Legislation does not allow the use of restrictive or coercive measures. Aim: The aim of this study is to identify the extent of, rationale for, and strategies staff believe would reduce the use of restrictive measures in group homes and daily activities services for people with ID. Method: A survey was sent to all staff in group homes and daily activities in one large Swedish municipality. The survey comprised four Likert style questions and one free text question, addressing the type of and reasons for restrictive measures, and how much staff value their replacement. A total of 250 surveys were completed. Results: A third of staff reported that some restrictive measures were used daily or weekly, primarily to protect and support service users. Adequate numbers of staff, better service design, and training were considered necessary for change. Conclusion: Staff report structural reasons, such as staffing, resources time, lack of training, and supervision for using restrictive measures. Staff see reducing the use of restrictive measures as requiring structural changes with engagement from the whole organization. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability do not have adequate access to mental health services and have worse mental health outcomes than the broader community. Access to information about mental health, treatment, and services has been advocated as one strategy to address these inequities. This article presents findings from a policy analysis of how the right to accessible information is represented in Australian mental health policy, with a focus on information access for people with intellectual disability. Method: An analysis of Australian and New South Wales state policies relevant to mental health services 2007–2017, in current use and available online (49 documents) was conducted. Principles in the United Nations Convention on the Rights of Persons with Disability 2006 and an integrated health literacy framework were used to frame a content analysis. NVivo 11 (QSR 2015) was used to search the policy documents and themes were identified according to the policy type and purpose. Findings The right to information is expressed in Australian and New South Wales state policy documents. However, the mental health policies do not refer to the communication needs of people with intellectual disability or incorporate strategies to address their needs. Many of the mental health policy directives incorporate the need for tailored communication. Some documents mention the needs of other groups of people with specific communication needs, but not people with intellectual disability. Implications: The inconsistency between the right to information expressed in policies and processes to communicate information with people who have intellectual disability needs to be addressed. The longstanding disparities in health outcomes, and difficulties accessing mental health service experienced by many people with intellectual disability underline the pressing need for policy to require accessible information practices. [ABSTRACT FROM AUTHOR]

Background: The identification and treatment of psychiatric disorders in individuals with autism spectrum disorders (ASD) and ID presents many challenges. We describe the development of a professional network, together with a standardized protocol for clinical assessment, designed to promote clinical competence and professional development in eight clinical centers responsible for providing mental health services to autistic individuals with ID across all four health regions of Norway. Specific aims to describe: (1) patterns of psychiatric and behavior problems in patients treated by the network, (2) patterns of change over time, and (3) the relationship between psychiatric disorders and behavior problems. Method: A standardized protocol was used to assess individual progress in 132 patients (inpatients and outpatients) with autism and ID over 2 years (at referral (T1), after 1 year (T2), and after 2 years (T3)). Changes in psychiatric symptoms and behavior problems were assessed with the Psychopathology in Autism Checklist (PAC) and Aberrant Behavior Checklist (ABC). Results: Patients showed significant (p <.001) improvements from T1 to T2 on the psychosis, depression and anxiety subscales of the PAC, but no significant improvement on the obsessive compulsive disorder (OCD) subscale. Improvements were maintained from T2 to T3. Patients showed significant (p <.01) improvements on the ABC total score and on all ABC subscales except inappropriate speech from T1 to T2; these improvements were maintained from T2 to T3. Discussion The combination of a professional network and a standardized protocol for clinical assessment has promise as a strategy for improving professional competence and facilitating specialized mental health services for autistic individuals with ID and psychiatric disorders across an extensive geographical area. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities die at much younger ages than the general population, with this gap in life expectancy greater for females than males. This study aimed to seek the views of international experts concerning evidence relating to gender and the premature deaths of people with intellectual disabilities, their views on priorities for future research, and recommendations for future research and policy. Twenty international experts on the health and/or mortality of people with intellectual disabilities were invited to complete an online questionnaire. The questionnaire was based on summary statements from a literature review on gender and premature death among people with intellectual disabilities compared to the general population. Summary statements included general topics such as mortality and specific major causes of death (e.g., cancer). For each summary statement, respondents rated on 5‐point scales: their agreement with the statement; the importance of the topic; and the adequacy of the evidence. Participants then indicated their top three priorities for future research, and gave recommendations for future research and policy. Eighteen (90% response rate) respondents from nine countries participated. There was consensus among respondents regarding the greater inequality in intellectual disability vs. general population mortality rates for women compared to men. Evidence was considered inadequate for most topics. Evidence on cause‐specific death rates was the most frequently mentioned main research priority, followed by age trends in mortality compared to the general population. Recommendations ranged from the need to use consistent methodology and case definition in future research, to the need for governments to be called to account on the issue. Further evidence on gender and mortality is urgently needed; an international consensus on recommendations for future research pertaining to gender and the premature deaths of people with intellectual disabilities would greatly assist the development of evidence‐based policy and practice. [ABSTRACT FROM AUTHOR]

Background: Special education advocacy trainings, such as the Volunteer Advocacy Project (VAP), have the goal of training advocates who can eventually support families in accessing needed services for students with disabilities. In addition to the training goal of increasing participants' special education knowledge and advocacy comfort, it is unknown if the VAP improves other participant outcomes related to later advocacy. Specific Aims: In this study, we asked: (1) Do VAP participants improve from pre‐ to post‐test on knowledge and advocacy comfort, as well as on role identity, involvement in the disability community, and empowerment?; (2) Do participants' roles and levels of education moderate improvements in these outcomes?; and (3) Do participants who are differentially higher or lower on any of these variables at the pre‐test show greater improvement from pre‐ to post‐test on one or all other variables? Method: Participants included 70 graduates of the VAP from 2014 to 2016. These participants completed pre‐test and post‐test assessments with measures on: special education knowledge, advocacy comfort, role identity, involvement, and empowerment. Findings: Results showed significant change in knowledge, comfort, involvement, and empowerment from pre‐test to post‐test. Only level of education significantly moderated the change in role identity from pre‐test to post‐test, with those with high school education increasing their role identity compared to those with a college degree or more. Empowerment was closely related to pre‐test levels and to change scores for all other variables. Discussion: Implications for future research and practice are discussed, including the need to better understand moderators of treatment effect and mechanisms of change for advocacy trainings. [ABSTRACT FROM AUTHOR]

Background: Creating equitable access to mainstream health and healthcare service has been promoted as a means of addressing the health disparities experienced by people with intellectual disabilities (ID) globally. Specific Aims: This study addressed two questions: What strategic actions are most likely to bring about inclusive primary, secondary, and tertiary health systems for people ID? What are the system indicators that can be used to evidence a reduction in health disparities for this population? Method: A four‐phase study was undertaken involving an international expert advisory group, literature reviews, and individual interviews with 16 key informants from Special Olympics (SO). These led to an online international survey in which 61 respondents rated the relevance and feasibility of 30 strategic actions and system indicators to promote inclusive systems and reduce health disparities. Findings All the strategic actions and system indicators were endorsed as relevant but less so for the feasibility of implementing them. Top‐rated strategic actions included the availability of policy statements and practice guidelines on making reasonable adjustments, mandatory training of health professionals on ID, and their involvement as cotrainers in staff training. Discussion Implementing these strategic actions and system indicators will be a major undertaking and one that is unlikely to be speedily achieved given the many different policy and health systems that exist even within a locality as well as nationally and internationally. Nonetheless, the identified actions and indicators from this study can form the basis for improved access to health and for advancing the human rights of persons with ID. [ABSTRACT FROM AUTHOR]

Objectives: The goals of this study were to examine and compare (a) the annual adult mortality rates and (b) the most commonly reported underlying causes of death between a cohort of Manitobans with intellectual and developmental disabilities (IDD) and a matched comparison group without IDD. Methods: Using linked health and nonhealth administrative data, a cohort of Manitoba adults with IDD, aged 25–99 years in 2012, was identified. Each person in the study cohort was matched with three persons without IDD based on age, sex, region of residence, and morbidity level. The two groups were followed for three years (2013–2015). Crude annual adult mortality rates and avoidable premature mortality rates were calculated. The leading causes of death over the 3‐year study period were tabulated by ICD‐10 chapter. Coding of the underlying causes of death was reviewed. Results: The crude annual mortality rates for Manitoba adults with IDD were 1.8–2.4 times higher than those for the matched comparison group and remained stable over time. Disparities in mortality rates for the IDD cohort relative to the matched comparison group decreased with increasing age. No significant sex differences were found. The leading causes of death among the IDD cohort were diseases of the circulatory system, cancer, and diseases of the respiratory system. Avoidable premature deaths were 2.3–3.3 times more prevalent among Manitoba adults with IDD compared to the matched comparison group. An IDD diagnostic code was reported as cause of death in 2.11% of cases. Conclusions: The excess mortality among adults with IDD should be monitored in Manitoba and all other jurisdictions and attention paid to the causes of death and their coding. [ABSTRACT FROM AUTHOR]

People with autism and other developmental disabilities are often supported by staff teams in accommodation, day support, and employment services. Although the literature outlines a number of individual staff characteristics that can influence the "quality of support," there is a paucity of research investigating the characteristics of teams as a whole. Given the emphasis placed on "team work" in human services, this study investigated what constitutes the characteristics of an effective team in disability services. An online Delphi study was employed, whereby disability support staff and their managers answered a series of surveys to build a consensus as to "what constitutes an effective team." The emerging consensus was analyzed using inductive thematic analysis, descriptive statistics, and the intraclass correlation coefficient. A consensus emerged concerning three core elements which combined constituted an effective staff team. In order of importance, these were a shared focus on client outcomes, effective leadership, and good communication among the team. However, a range of additional factors were also identified. These represented additional considerations that were, in the opinion of the participants, also important to building and maintaining an effective team. Focusing on client outcomes, fostering effective leadership, and ensuring good communication are necessary, but insufficient to establish an effective staff team. The implications are discussed in the context of policy development concerning staff recruitment, team development, supervision, and service evaluation. [ABSTRACT FROM AUTHOR]

Abstract: Medications use in adults ageing with Down syndrome (DS) has not been studied extensively. People with DS are at increased risk of hypothyroidism, seizures, and dementia. It is possible that this pattern of multimorbidity is associated with polypharmacy. The aim of this study is to describe the patterns of medical disorders, symptoms, and medications, variation with age and residential setting, and utilization of health screening in an ageing cohort with DS. Data were obtained from wave one (2009/2010) of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing. Information on disorders, symptoms, health screening, and medications was gathered using preinterview questionnaires and face to face interviews with participants and/or caregivers. Of the 721 participants answering the questions about medication use and cause of intellectual disability, 20% had DS (n = 144). Descriptive statistics describe the prevalence of disorders and medications and proportion of participants attending health screening for disorders commonly associated with DS. The most commonly reported disorders were eye disease (61.8%), thyroid dysfunction (38.2%), constipation (34.7%) high cholesterol (32.6%), pain (32.1%), and emotional/psychiatric/nervous disorder (25%). The most commonly reported medications were thyroid hormones (43.8%), laxatives (27.1%), pain relievers (27.1%), and lipid modifying agents (26.4%). Polypharmacy, excessive polypharmacy, and multimorbidity were more prevalent among the older group compared to the younger group (37.3% vs. 14.3%; 13.4% vs. 7.8%; 73.1% vs. 58.4%, respectively). Uptake of memory assessments (32.9%), hearing tests (23.8%), and bone density screening (9.2%) was poor, particularly among those living independently, yet general practitioner visits were frequent and extensive. Polypharmacy and excessive polypharmacy are prevalent in this population, yet the provision of health care screening is inadequate. Medications review is needed since the risks posed by multiple medications use have not yet been quantified. As people with DS age, support is necessary for health care professionals, people with DS and their carers to help them optimize the use of medications. [ABSTRACT FROM AUTHOR]

Subjective well-being refers to an individual's satisfaction or happiness with their life. The construct is often measured with the Personal Wellbeing Index (PWI), which has been adapted for children of different ages, and adults with an intellectual disability (ID). However, there is no subjective well-being measure for adolescents with an ID. This study reports on the PWI-School Children with Intellectual Disability (PWI-SCwID), which trialled a pretesting Likert training protocol to enable valid completion of the questionnaire. From this, it was aimed that the subjective well-being of adolescents with ID would be compared to adults and adolescents without ID, and adults with ID. The PWI-SCwID was administered to 42 adolescents with ID. They had a mean age of 15.86 years (SD = 1.70) and 52% were female. Participants were recruited from special education schools and dance classes for adolescents with Down syndrome. Thirty-seven participants (88%) validly completed the PWI-SCwID. Of the 17 participants with Down syndrome, who are most likely to have moderate to severe intellectual disability, 76% returned valid questionnaires. Comparison of the current sample with other samples of adolescents and adults without ID found no significant differences in subjective well-being. Adults with ID from another study reported lower happiness with their standard of living than the current sample. The higher completion rate reported in this study is likely due to the implementation of training protocols that taught and assessed the participants' ability to use a Likert-type scale. The high completion rate of participants with Down syndrome suggest that the revised protocols enable the collection of well-being data previously believed to be unattainable. The implication is that evaluating policy and interventions may consider the subjective well-being of a vulnerable group who typically have limited capacity to advocate for themselves. [ABSTRACT FROM AUTHOR]

There are a number of hidden populations in the United States whose victimization goes undetected and unreported. This study aims to assess the victimization experiences of one such population: American children diagnosed with autism spectrum disorders (ASDs). Utilizing the Juvenile Victimization Questionnaire (JVQ), this study obtained past-year and lifetime prevalence rates of interpersonal violence in a sample of children with ASDs ( N = 262). Results showed that almost 89% of these children had experienced an incident of victimization in their lifetime, while almost as many (82.1%) had experienced an incident within the last year. Among those who had been victimized once within the last year, 92% experienced at least a second victimization within that same time period, pointing to significant levels of poly-victimization. Risk ratios confirm that if a child experiences an incident of victimization in the past year, s/he is at risk to experience another type of victimization during that time frame, no matter what type of initial victimization exposure was examined. Previous research specifically addressing the victimization of children with ASDs in the United States has been limited and often focuses on a specific form of victimization, such as bullying. Implications include considering the impact of exposure to multiple forms of victimization and addressing the possibility of long-term trauma resulting from chronic exposure to victimization. [ABSTRACT FROM AUTHOR]

Although social integration of youths with intellectual disabilities improves their psychological adaptation, it nevertheless exposes them to a higher risk of stress. The author's goal was to verify the regulatory role of anxiety, respectively, as a trait and as a state in youth with mild intellectual disability who are coping with difficult situations. The study, involving a group of 120 students at the Education and Rearing Center in Kielce (Poland), used two psychological methods pertaining to a cognitive paradigm. The first was the State-Trait Anxiety Inventory (ISCL-Polish version of STAI) and the other was the self-description technique of the authorship ' That's Life,' devised with the aim of revealing either task strategies or emotional and avoidant strategies adopted by the respondents. The tools are matched to specific cognitive abilities and social experiences typical of youth with mild intellectual disability. Correlative research model was applied. The results of linear regression and variance analyses showed the regulatory role of the state anxiety for youth with mild intellectual disability with reference to coping strategies. A higher intensity of anxiety stimulated their defensive activity, especially in the context of ambivalent conflicts, whereas a decrease in state anxiety led to their employing task-focused strategies. The results should encourage the development and application of anxiety-reducing techniques based on cognitive confrontation to activate task-oriented coping. [ABSTRACT FROM AUTHOR]

Knowledge about people with intellectual disability (ID) and their connections to the labor market is scarce. The aim of this study was to describe and analyze the entry into and representation in the Swedish labor market for people with ID, discussed with a special focus on the gender perspective. This study included 2,745 individuals (30% women and 70% men) who graduated from Swedish upper secondary schools for pupils with intellectual disability (USSID) in the 2000s, and who were defined as employees in 2011. Graduation data from 2001 to 2011 were analyzed in relation to employment data from 2011 and adjusted for gender, graduation year, and educational program. Results show that men who attended a national USSID program and graduated between 2001 and 2006 were the most likely group to have a job. The authors conclude that the gender differences in the Swedish labor market are more clearly pronounced among women and men with ID in relation to employment rate, wage levels, and professions than in the general population. Education, welfare-services, and interventions specifically targeted to meet the needs of people with ID have to develop in more gender-sensitive ways. [ABSTRACT FROM AUTHOR]

Although persons with Down syndrome now live to approximately 60 years, the implications of increased longevity on family caregiving have received inadequate attention. Even compared with adults with other types of intellectual disabilities, by their late 40s and 50s adults with Down syndrome often show multiple health problems, cognitive-adaptive declines, and changes in daily work and activities. If alive, their parents are more often elderly, as mothers give birth to newborns with Down syndrome at a median age of 32 years (with high percentages age 40 and older). In addition, higher percentages of adults with (vs. without) Down syndrome live in their family homes and greater percentages may ultimately reside with siblings. Compared with caring for other adults with intellectual disabilities, aging adults with Down syndrome may present earlier-and possibly more severe and more health-related-caregiving challenges to their parents and siblings. As a field and as a society, the authors note that we need to promote revisions of family support policies and interventions; recognize the inter-relations of aging-related changes and their effects; and anticipate how aging-related changes in the brother-sister with Down syndrome and the parent(s) might affect sibling caregivers. [ABSTRACT FROM AUTHOR]

Direct support professionals (DSPs) play an important role in the process of integration of people with intellectual disabilities. Nevertheless, little is currently known about what determines the level of effort exerted by DSPs to enable the social integration of their clients. The aim of this study was to investigate three different psychological determinants (attitudes, social norms, and meta-evaluations) of the behavioral intentions of DSPs to facilitate the social integration of their clients. Semistructured interviews were conducted with 28 DSPs working in a setting of 'reversed integration,' as well as 25 family members and 25 neighbors. The DSPs' perceived social norms and meta-evaluations of neighbors and family members were compared with their actual social norms and evaluations. The authors found that half of the DSPs interviewed were positive about integration, whereas the other half were negative or neutral. Concerning social norms, the DSPs expect neighbors to have neutral attitudes toward the integration of people with intellectual disabilities, while in reality the neighbors are very positive. More than half of the DSPs were uncertain about the family members' opinions about integration. Asking the family members themselves, there was some variation in their attitudes toward integration. Regarding the meta-evaluation, DSPs had a realistic idea about how their work would be evaluated by family members and neighbors; both groups were positive. It is evident that this group of DSPs had an overly negative idea of neighbors' opinions about integration and contact with people with intellectual disabilities. Creating awareness of a supportive social norm in the neighborhood could help and encourage DSPs to strive for social contact between their clients and neighbors. [ABSTRACT FROM AUTHOR]

Attention to the auditory environment of people with profound intellectual and multiple disabilities (PIMD) is limited, both in research and practice. As there is a dynamic interplay between the quality of the auditory environment and well-being, a study was undertaken to test the validity of the theoretical framework regarding the role of sound in homes for people with PIMD. The framework was formulated using techniques from soundscape and emotion research and resulted in a taxonomy of auditory environments, or soundscapes, including an important role for audible safety. A convenience sample of 34 healthcare professionals from various organizational layers volunteered to participate in a focus group study. During this expert meeting their latent knowledge was examined to see if it corresponded to the proposed theoretical framework. The answers given by the participants were grouped in five categories, Influencing behavior, Atmosphere, Clarity, Structure, Safety, and Recognition, showing a strong consistency between the knowledge and experience of the professionals and the theoretical framework. Results suggest the participants working on a strategic level have a less comprehensive understanding of the role of sound in the daily care. The authors' recommended the increase of awareness amongst the staff of organizations caring for people with PIMD of the role of sound in the environment so as to enhance psychological well-being and quality of life and thus reduce the prevalence of behavioral problems. [ABSTRACT FROM AUTHOR]

Researchers, professionals, and families have shown increasing concern about the quality of life of people with intellectual disabilities (ID) and their families. Due to the growing interest in family quality of life (FQoL) as a key issue for social policy in the ID field, the aim of this research was to explore FQoL in Catalonia (Spain). The Spanish Family Quality of Life Scales (CdVF-E) were completed by 144 families using the version for households with children up to 18 years of age and by 122 families using the version for households with adult children over 18 years of age. The results show that FQoL is higher in families with adult children over 18 years of age than in families with children up to 18 years of age, and there are differences among domains in both groups. Likewise, there are relations between the scores in the scales and some demographic characteristics such as marital status, level of education, employment status, and family income, particularly in households with children under 18 years of age. [ABSTRACT FROM AUTHOR]

Many low- and middle-income countries have experienced an epidemic of obesity in the last few decades. However, no studies have examined the relationship between country economic status and weight status among adults with ID. This study compared the prevalence of underweight, normal weight, overweight, and obesity among adult Special Olympics participants by country economic status. A total of 19,295 (men, n = 12,037) measured height and weight records were available from the Special Olympics International ( SOI) Health Promotion database. The 159 countries in the database were recoded according to the World Bank's classification of country economic status as: low-income, lower middle-income, upper middle-income, and high-income. Body mass index ( BMI; kg/m2) prevalence rates were calculated for underweight, normal weight, overweight, and obesity for men and women by economic status. Odds ratios, adjusted for age and sex, were used to examine differences in BMI by country economic status. Overall, 31.9% of SOI participants from low-income economies, 48.6% from lower middle-income, 43.6% from upper middle-income, and 66.0% from high-income economies had BMI indices outside of the normal range. For the low-income countries, the proportion of underweight and overweight/obesity was similar (17.2% and 14.7%, respectively). For the other three levels of economy, participants with BMI levels outside the normal range were largely overweight/obese, rather than underweight. Women, older participants, and those from higher-income countries were much more likely to be overweight/obese. Considerably, more research on the key behaviors associated with BMI status and the extent to which environments (economic, social, and physical) are obesogenic is needed to explain these differences and to begin to design interventions that can be both targeted for persons with ID and coherently implemented across sectors and settings. [ABSTRACT FROM AUTHOR]

An increased life expectancy of people with Down syndrome ( DS) and the occurrence of early aging are now recognized. However, few data exist on functioning and disability profile of early-aging people with DS, which takes into account how health conditions interact with environmental factors. Based on the World Health Organization's International Classification of Functioning, Disability and Health ( ICF), the authors collected preliminary data describing functioning and disability about early aging from 31 adults with DS aged 45 and older residing in the greater Milan, Italy, area. ICF checklist was used to collect data. Of the 31, 18 were women (mean age = 51.1), all were unmarried, 21 lived with their family, and 23 never worked. Few problems in body functions (e.g., vision and hearing, cognitions) and body structures (e.g., ear and eye structures, cardiovascular, endocrine, and digestive systems, skin structures) were reported. ICF categories within Activity and Participation domain emphasized the facilitating effect of environmental factors on activities related to domestic life (e.g., doing housework, acquisition of goods and services, preparation of meals). Within the Environmental Factors domain there are few barriers, mainly with respect to labor services, and very strong facilitating factors, particularly related to product of technology (for personal indoor and outdoor mobility and transportation) and the support of family members. The authors note that the findings can set out premises for further study on aging people with DS and their caregivers at national and international levels. [ABSTRACT FROM AUTHOR]

In Québec, Canada, health and social services available to persons with intellectual disability are hierarchically organized into three levels of care: primary, secondary, and tertiary care. The referral processes through which persons gain access to services at each level vary across facilities. As a result, persons with intellectual disability may not receive the appropriate level of care and the responsibilities of facilities at each level overlap, creating an undue burden on the public healthcare system. This study sought to propose a structured assessment and referral method within the network of public services. Specifically, it evaluated the correspondence between the currently received level of care and an expert committee's determination. Furthermore, it examined client-related variables that were associated with the level of services. An expert committee evaluated the level of specialization of services required by 30 persons with intellectual disability. The committee's determination was based on participants' files and presentations by their primary case worker. It was found that 10 out of the 30 participants were not receiving the level of care determined to be necessary by the expert committee. Challenging behaviors were most strongly associated with the committee's determination. This study underscores the primacy of clinical judgment, rather than a predetermined list of participant characteristics, in order to refer persons with intellectual disability toward services that best meet their specific needs. It also highlights the importance of taking into account challenging behaviors. [ABSTRACT FROM AUTHOR]

With the deinstitutionalization movement in Canada, healthcare professionals are caring for a greater number of individuals with intellectual disability ( ID) in their practices, and inevitably require additional training to provide this care. Queen's University has responded to this need and developed an innovative educational course promoting interprofessional education ( IPE) and interprofessional practice ( IPC) as it relates to ID curriculum and healthcare provision. This study measured healthcare students' change in knowledge, skills, and attitudes toward individuals with ID and how it affected their readiness for interprofessional care. Subjects were graduate students from the fields of medicine, nursing, clinical psychology, occupational therapy, and physiotherapy. Course curriculum developed used a blended teaching approach with a combination of online learning, lectures, team-based problem solving, and client interviews. Evaluation was completed on 247 students, utilizing a pre-post course questionnaire addressing content areas of knowledge, skills, and attitude, and by analyzing individual professional differences. Significant differences were found, indicating improvements in student knowledge and skills for the majority of disciplines after course participation. A positive trend was found in outcome responses for student attitudinal change, ranging from neutral to positive attributions about individuals with ID. Authors note improvements in student learning and positive attitudinal change following an educational course concerning optimal healthcare and collaborative practice in ID. They propose that an interprofessional blended training curriculum for future healthcare professionals can foster best practice and quality service for this currently underserved population. [ABSTRACT FROM AUTHOR]

Research exploring the experiences of families during the process of seeking out-of-home accommodation for an adult son or daughter with intellectual disability is scarce. A study was undertaken to examine this process. Nine families currently seeking out-of-home accommodation for their adult son or daughter were interviewed and interview data were analyzed using thematic analysis. Two main themes were identified: (1) reasons for seeking housing and (2) experiences of seeking housing. Parents' aging and increased health problems along with the offspring's wish for greater independence were the main reasons for seeking out-of home accommodation. Experiences of looking for a house were not straightforward in that parents often wanted to plan ahead but were prevented from doing so as the housing system prioritizes 'housing crises.' Findings showed that families experienced seeking housing as stressful and frustrating and would like to see social care and housing professionals acknowledge them as collaborative partners in the process. The authors conclude there also needs to be greater clarity of expectation of the duration of finding suitable accommodation, a process that needs to be started early in a young adult's life. [ABSTRACT FROM AUTHOR]

The use of restraint measures in the care of people with an intellectual disability ( ID) and challenging behavior ( CB) is recognized as problematic around the world and attempts have been made to reduce reliance upon this coercive approach. In Norway, legislation was enacted to restrict the use of restraint but paradoxically since it was implemented in 1999 there has been a very large increase in the use of one form of restraint: statutory or planned interventions. This study examined professionals' explanations for this unexpected increase. ID care staff ( n = 178) and local government supervisors ( n = 17) completed a semi-structured questionnaire (total n = 195). All participants were involved directly or indirectly in implementing restraint. Comparisons were made between the different levels of care staff and the supervisors. The care staff interpreted the increase as due to greater awareness of the regulations and restraint interventions. Supervisors had low expectations of a decrease in restraint rates in the future. It was felt that the new regulations on the use of restraints in the care of people with ID and CB had raised awareness of ethical issues and improved education on this topic. Future research should address possible strategies for sustaining these improvements and at the same time stabilizing or reducing the number of people receiving restrictive care. [ABSTRACT FROM AUTHOR]

In Québec, services of people with intellectual disability ( ID) are divided into three levels of care based on the World Health Organization model. Currently, no standardized tool is used to assess the level of specialization of care required by persons with ID in the province despite the Ministry of Social and Health Services' reference framework, which stipulates that services should be fair and easily accessible to all. The present study examined potential tools to address this situation. The scores on the Supports Intensity Scale- French version ( SIS-F), Adaptive Behavior Assessment System- II, and Scales of Independent Behavior- Revised ( SIB-R) (Part 2) of 30 participants with ID were examined in conjunction with the required level of specialization of services, as determined by an expert committee. Scores on these scales were not linearly related to the required level of care. This indicates that scores cannot be used to determine if a person needs services from the primary, secondary, or tertiary care facility. However, significant differences were observed between the primary and tertiary levels on the Exceptional Behavioral Support Needs scale of the SIS-F and the SIB-R Part 2. The study shows that the expert committee was more successful in making this determination than a standardized instrument. The instruments used in the present study, not designed for this purpose, were insufficient. Nonetheless, results underline the importance of factoring in challenging behaviors in the assessment of service needs. [ABSTRACT FROM AUTHOR]

The authors report on the outcome of a consultation workshop held in Iran, which focused on knowledge translation ( KT) and intellectual and developmental disability ( IDD). The goal was to learn more about the contextual factors that facilitate and impede KT in applications related to IDD in Iran. Forty-six stakeholders participated, representing the perspectives of policy-makers, administrators, parents, practitioners, and researchers. The authors introduced a conceptual framework for KT and assessed KT capacity using a validated tool. They facilitated discussions among stakeholder groups with respect to contextual facilitating and impeding factors, and suggested ways to improve IDD-related KT activities in Iran. The authors found that all of the stakeholder groups highly valued research, but there were statistically significant differences among the participating stakeholder groups in acquiring, accessing, adapting, and applying research information to their practice. A number of factors, including the existing connections between parents and practitioners, could potentially facilitate the development of collaborative KT strategies. A lack of time, incentives, and resources were reported by all stakeholder groups as impeding factors for KT in IDD. The authors believe the researchers in Iran need to work closer with stakeholder groups to develop KT strategies with respect to IDD and thus achieve more effective dissemination of research findings that affect policy and practice. [ABSTRACT FROM AUTHOR]

The authors sought to assess the effectiveness of integrative and inclusive education in Poland as well as to determine the relations between the psychosocial functioning and school achievement of pupils with mild intellectual disability attending special, integrative, and mainstream schools. Nearly 900 ( n = 859) grade four pupils rated their social and emotional integration within their school and took a school achievement test. Pupils from integrative and mainstream schools achieved significantly higher scores in the school achievement test than pupils from special schools, whereas students from special schools were significantly better integrated emotionally and socially than integrative and mainstream school students. Additionally, emotional integration was a positive predictor for school achievement of pupils attending special schools. Among pupils attending integrative and mainstream schools, the relationship between emotional and social integration and school achievement was more complex and curvilinear: The highest results were achieved by the best and the worst integrated pupils. These findings are discussed in the context of inclusive education theory. [ABSTRACT FROM AUTHOR]

As some people with profound intellectual and multiple disabilities ( PIMD) are at a high risk of developing a challenging behavior, it is useful to look at measures taken to prevent or diminish this type of behavior. The authors undertook a study of how self-injurious, stereotypical, destructive, or aggressive behaviors are addressed in daily practice in residential facilities. A stratified sample of 30 people with the most severe and frequently reported challenging behaviors was selected from a dataset of 181 children and adults with PIMD. Individual comprehensive service plans were used to determine whether challenging behaviors were present and how these problems were addressed. In total, only 51.8% of the challenging behaviors that occurred were described in the individual plans, and for 53.7% of the challenging behaviors, strategies or interventions were included in the individual service plans. Only 17.2% of the cases contained goals formulated to prevent or diminish such behavior. A significant positive relationship was found between the severity of challenging behavior and the extent to which it was described in the individual comprehensive service plans. The authors also noted that interventions that were aimed at diminishing or preventing challenging behavior were highly simplistic, and virtually no goals were formulated to document, diminish, or prevent challenging behavior in people with PIMD. [ABSTRACT FROM AUTHOR]

In Ireland, an increasing number of students with special educational needs are leaving mainstream schools and enrolling in special education schools. A comparable context is countries that share an inclusion ideology and are at the implementation stage of inclusive education. The authors sought to investigate the reasons why students aged 12+ are leaving mainstream education and transferring to special schools, and to identify what burden this places on the special schools. Data were obtained from questionnaires sent to 54 special school principals. These administrators reported on their experiences with 246 transfer students. Descriptive analysis, Kruskal- Wallis, Mann- Whitney U, and exact tests of significance were conducted between school groups and level of agreement with perceived difficulties. The principals reported an increasing trend (40% over 5 years) in students enrolling in special schools. The main reason given for the students leaving mainstream schools was the failure of mainstream schools to meet their academic, social, emotional, behavioral, and access-to-health resource needs. Adjustment and integration problems resulted from a lack of transition planning, entering too late into the special school curriculum, and an over-dependency on supports. Students were reported to display a lack of self-confidence, classroom disengagement, peer interaction difficulties, and challenging behavior, and these dysfunctions were attributed to the mismatch between the students' educational and other special needs and the educational environments. [ABSTRACT FROM AUTHOR]

Reciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving. [ABSTRACT FROM AUTHOR]

This article describes the aims, development, and testing of the Mobility Assessment Schedule ( MAS), an instrument assessing the ability of students with intellectual disability ( ID), to function effectively as pedestrians in normal traffic. The MAS provides information about individual mobility skills of school-age children with ID and measures the child's traffic skills congruent with safely and independently functioning in traffic situations. Mobility skills are measured in eight areas: visual perception, auditory perception, reaction, memory, attention, motor skills, social skills, and communication. The MAS was tested with 128 students at one school for children with ID in Germany. The internal consistencies of the scale and subscales were reasonable to good. Baseline results showed that the students already possessed-even before mobility training-many skills that are necessary for participation in traffic situations. The MAS is applicable and valid to assess traffic functioning skills of children with ID and can be an important tool for mobility training because it delivers information on various skills, which are necessary to function independently in traffic situations. This inventory can be part of the school's individual educational plans. [ABSTRACT FROM AUTHOR]

Is taking the arm of a woman with an intellectual and developmental disability ( I/ DD) and pulling her along in order to carry out a routine domestic task an abusive practice? In spite of the existence of some approved definitions, the interpretation of the situation observed may lead to different opinions about what is considered abuse. With this in mind, the authors compare social and legal points of view via an exploratory study. A vignette was submitted to a legal adviser, two groups of parents of people with I/ DD ( n = 11 and n = 7) and two groups of direct-care professionals ( n = 12 and n = 11). The vignette portrayed a realistic scenario in which a care professional, bristling with impatience at the slow pace of activity of a middle-aged woman with I/ DD, urges her-in what may or may not appear to be an excessively forceful manner-to attend to a task. The corpus is composed of the legal adviser's analysis, data from the focus group and questionnaires filled out by the focus group participants. The legal analysis concludes that although they are not trivial, it is quite unlikely that the facts subjected for review would lead to legal proceedings. On the other hand, from the social perspective, both the parents and direct-care professionals saw the actions as an unacceptable infringement and a violation. The authors address the risk of the legal system only being concerned with more extreme 'caregiving' practices. The application of a case study approach showed the usefulness of looking at 'borderline' situations that are not actually covered by existing laws. The results indicate the need for more pronounced action, specifically in devising professional codes of practice. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities are at increased risk of abuse, but their views regarding this have not been explored. The authors undertook a study in Wales to examine what help people with intellectual disabilities feel they need to keep safe and, if they are abused, what support they need. A questionnaire was distributed to 47 participants with intellectual disabilities attending a residential research event and as a postal survey across Wales. From this, 107 (56%) usable questionnaires were returned. Respondents identified most strategies for keeping safe as being useful but were more likely to identify personal strategies rather than actions other people could take. When abuse does occur, having a trusted person to speak to and one who will believe you were viewed as the most important aspects. The authors noted that people with intellectual disabilities can identify personal safety strategies and their views and experiences should inform personal safety courses and staff training. Furthermore, they recommend that effective circles of support need to be developed both to protect against abuse and to provide support should it occur. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities are often excluded from research, in part because they may be perceived as lacking capacity to provide informed consent. A requirement of informed decision making about research participation is ability to understand the study description and disclosures presented during the consent process. The authors' aims were to determine the extent to which study participants with intellectual disabilities were able to answer questions about key aspects of study disclosures, identify ways in which people who provided appropriate answers for all of the questions differed from those who had difficulty with one or more of the questions, and examine patterns of responses to see if certain issues were more difficult to understand than others. The authors piloted a short set of questions to assess the extent to which adults with intellectual disabilities were able to answer questions about key aspects of a health promotion study. More than half of study participants correctly answered all of the questions. For those not able to answer all questions, identifying potential risks of being in the study proved the most challenging. The findings indicate that many people with intellectual disabilities likely can provide their own consent to participate in low risk studies. [ABSTRACT FROM AUTHOR]

People with intellectual disability ( ID) are living longer than ever before, raising concerns about old-age-associated disorders. Dementia is among the most serious of these disorders, and theories relating cognitive reserve to risk predict that older adults with ID should be particularly vulnerable. Previous estimates of relative risk for dementia associated with ID have been inconsistent, and the present analyses examined the possible influence of variation in diagnostic criteria on findings. As expected, relaxation in the stringency of case definition for adults with ID increased relative risk, underscoring the importance of developing valid criteria for defining mild cognitive impairment and early dementia and distinguishing between the two in adults with ID. Once available, these standards will contribute to more effective evidence-based planning. [ABSTRACT FROM AUTHOR]

Persons with cognitive disabilities such as intellectual disability, borderline intellectual disability, and acquired brain injury are overrepresented in Australian criminal justice systems both as victims and as offenders. Data obtained in Australia and internationally indicate that up to 12% of the prison population has an intelligence quotient ( IQ) of less than 70, with up to 30% having an IQ of between 70 and 80, indicating substantially higher representation of intellectual disability and borderline intellectual disability than in the general population. Indigenous Australian adults in prison are significantly more likely to have intellectual disability than their non-Indigenous counterparts. Points of intervention throughout individuals' trajectories into and through the criminal justice and human service system are investigated, allowing new ways of understanding how persons with intellectual and other cognitive disabilities are vulnerable to the harms of control-and-punishment systems. Using an innovative data-linking and data-merging method, the authors compiled longitudinal administrative data from all criminal justice and human service agencies in New South Wales, Australia, to create life-course pathways for 2,731 persons who had served time in prison in New South Wales and whose mental health and cognitive disability diagnoses were available. Mapping service agency responses and institutional trajectories of these persons from an early age reveal a picture of early police contact and enmeshment in juvenile and adult corrections with high frequency, but often of low duration. Poor recognition of cognitive disability coupled with the presence of mental disorders and substance use disorders is associated with multiple and compounding social disadvantage and vulnerability to harm. This group is subject to multiple, simultaneous, and continuing human service agency interventions, which have only limited impact on their offending and (re)incarceration. Provision of appropriate support before, during, and after imprisonment is likely to reduce these individuals' vulnerability to harm and improve their experiences of community integration. [ABSTRACT FROM AUTHOR]

In recent years, a combination of factors has seen life expectancies for people with intellectual disabilities increase dramatically. The majority of research so far has focused upon metropolitan areas, but little information is available regarding the impact of this relatively new phenomenon within rural localities. The authors examine the issues surrounding aging with an intellectual disability within rural areas and identify possible areas of change to policy and practice that may better support the individual living in nonmetropolitan locations. A three-round Delphi research model was utilized over a period of 12 months to examine the views of disability support workers from rural organizations regarding issues associated with aging. This study detailed a large number of items rated as important by direct care staff. A thematic analysis identified specific areas of concern including funding, training challenges and options, and access to relevant generic and specialist services. The findings of this study have implications for the delivery of rural services and training of staff. The results point to the need for changes to initial training and professional development options to support staff to work successfully with people with intellectual disabilities who are aging in rural areas. [ABSTRACT FROM AUTHOR]

There is a critical need for objective data about receipt of preventive healthcare screenings that are not subject to self-response bias. However, no available evidence indicates which methods are effective for obtaining retrospective medical record data for women with intellectual disabilities ( ID) receiving care in the community. This article describes a procedure for obtaining retrospective medical record data for 199 women with ID who took part in a community-based, multisite, randomized controlled trial of a health education intervention. Data were analyzed to determine rates of correct physician identification and physician response rates during the 2006-2009 study periods. To assess accuracy in identifying physicians and response rates over time, Mc Nemar's test of paired proportions for dependent samples was used. Physician identification varied over time with correct identification being highest in more recent years. The majority of practices responded to our requests for medical record data; however, response rates and item completion rates were highest for the most recent data, with rates declining significantly for data from earlier years. Obtaining retrospective medical record data from community-based medical practices is possible, but difficult. Therefore, researchers should budget resources to accommodate a lengthy process with extensive follow-up. Researchers interested in older medical data face additional challenges in obtaining complete records. [ABSTRACT FROM AUTHOR]