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Many people with an intellectual and developmental disability (IDD) are biologically, socially, and economically/politically vulnerable to developing SARS‐COV‐2 (COVID‐19) compared to the general population. Most governments have developed public‐health policies and strategies to address the challenges that COVID‐19 has presented. These policies and strategies have been based upon the general population and in fact could be detrimental to the health and well‐being of people with IDD. This paper provides a review of the key learning points emerging from the COVID‐19 literature, together with guidance for the provision of services and government interventions for people with an IDD for future pandemics. Using guidance from the Joanna Briggs Institute, a scoping review was used to explore the current literature (scientific and grey) on IDD and COVID‐19. Three core themes emerged from the review. Prevention/protection: User‐friendly accurate accessible information, handwashing and social distancing, Personal Protective Equipment, shielding, track and trace, testing, vaccine compliance/hesitancy, and training. Mitigation: Making reasonable adjustments both to where people live, and to community healthcare/clinical practice; and the use of technology as a pandemic‐response strategy. Treatment/Management: Access to acute hospitals and lifesaving equipment, using a suitable clinical fatality assessment instrument, stopping Do Not Resuscitate notices, individualised care plans and hospital passports, family/paid carers to support people in hospitals; and use of telehealth in clinical care. This is the first international scoping review that provides a narrative synthesis of emerging themes related to the COVID‐19 pandemic and people with an IDD. This paper highlights themes related to preventing, mitigating, and treating/managing the care of this population during the COVID‐19 pandemic, which can inform future public‐health policies. This paper also exposes the negative impacts of public‐health interventions in both High‐Income Countries and Low‐Middle Income Countries for this population including lapses in upholding human rights. These data provide a basis for learning from the COVID‐19 pandemic in planning for future pandemics. [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]

Accessible summary: To feel safe and to keep well, all of us need to stay in touch with our friends—most of all in the pandemic, and even more if we have a disability.In these times of COVID‐19, we have kept a community group for men with learning disabilities going online.In the gaps between lockdowns, we have met in a mixed online and face‐to‐face group—with the face‐to‐face part happening in a library.The men say that they have been helped by both kinds of meeting, but that they liked the mixed or "hybrid" one the best.This article shows what we have learned from running the group in these ways, and it gives advice for anyone who might want to have a go themselves. Background: Social contact and belonging are among the most important keys to health and wellbeing, especially for the most vulnerable during the current global pandemic. Method: This reflective paper describes the authors' efforts to sustain an online version of a well‐established community psychology‐oriented group for men with learning disabilities, in challenging times. Drawing upon the learning disability literature and upon theories from community and embodied‐dialogical psychology, it explores the most salient shared issues, our joint efforts to address them and possible implications for future clinical practice. Findings: To take advantage of the discovered benefits of online working, we envisage that, post‐lockdown, the group will continue to meet in a "hybrid" (combined face‐to‐face and online form) as described herein: and with some pointers for anyone who might wish to create a similar group. [ABSTRACT FROM AUTHOR]

Background: The provision of unscheduled healthcare for children with intellectual disability is less researched than that focused on hospital settings or for adult services. The aim of the scoping review was to map the evidence base in this area and identify areas for future study. Method: A five‐stage scoping review framework was adopted. CINAHL, PubMed, SCOPUS, PsycINFO, Embase, ProQuest Dissertation & Theses and Google Scholar were searched. Studies published in English after 1/1/2000 were considered eligible for inclusion. Results: A total of 3158 titles and abstracts were screened, 137 full‐text articles were reviewed, and 25 papers met the inclusion criteria. Descriptive themes focused on inequities, needs and experiences of families', poor GP training, and limitations of existing evidence. Conclusion: Describing trends in healthcare utilisation by this population is valuable for monitoring quality of healthcare, however, addressing observed inequities will require approaches that recognise specific issues within the health system that result in inequities. [ABSTRACT FROM AUTHOR]

Accessible summary We wanted to know what people with learning disabilities know about dementia. We asked service users what the word meant to them, if they knew anyone with dementia, and what it was like to share a house with someone who has dementia. We learnt that: • Service users can know a lot about dementia. • Living with someone with dementia can be really hard – and staff do not always have enough time for everyone else. • Services should think more about how dementia affects everyone – not just the person who has the dementia. This paper reports on research that illuminates how people with a learning disability understand dementia and indicates the implications of these understandings for developing appropriate models of care. As this new policy and practice area struggles to provide appropriate and effective models of care for people with a learning disability and dementia, an awareness of service users’ understandings of dementia leads to a number of important insights. The wider research programme from which this paper is drawn aims to identify best practice in supporting people with learning disabilities to stay in their own homes as they grow older and develop dementia. A combination of focus groups, ethnography and individual interviews were conducted at eight sites across England. Participants were people with a learning disability who had dementia, and those who have lived with someone with dementia. The findings have the potential to improve support to this population as they grow older. [ABSTRACT FROM AUTHOR]

Aim: To determine if walking ability and presence of intellectual disability and epilepsy change from childhood to 50 years of age in individuals with cerebral palsy (CP), and if such changes are related to age, sex, or CP subtype.Method: This was a population-based follow-up study of 142 adults born from 1959 to 1978 (82 males, 60 females; mean age 48y 4mo, range 37-58y; 44% unilateral, 35% bilateral, 17% dyskinetic, and 4% ataxic CP) listed in the CP register of western Sweden. We compared childhood data with a follow-up assessment in 2016.Results: At follow-up, walking ability had changed significantly (p<0.001). The proportion of participants walking without aids had decreased from 71% to 62%, and wheelchair ambulation increased from 18% to 25%. Walking ability was related to subtype (p=0.001), but not to age, sex, pain, fatigue, or body mass index. The proportion classified as having intellectual disability had increased from 16% to 22% (p=0.039) and the proportion with epilepsy from 9% to 18% (p=0.015). Of those with childhood epilepsy, 46% were seizure-free without medication.Interpretation: Walking ability and the presence of intellectual disability and epilepsy had changed significantly since childhood. Life-long access to specialized health care is warranted for re-evaluation of impairments, treatment, and assistance. What this paper adds Changes in impairments in individuals with cerebral palsy (CP) over time are related to CP subtype. After 50 years, walking ability in CP may have deteriorated or improved. Intellectual disability in CP may not always be detected in early childhood assessments. Epilepsy in CP may develop after childhood or may be outgrown. [ABSTRACT FROM AUTHOR]

Background Transition to adulthood might be a risk period for poor health in people with intellectual disabilities. However, the present authors could find no synthesis of evidence on health and well-being outcomes during transition in this population. This review aimed to answer this question. Method PRISMA/ MOOSE guidelines were followed. Search terms were defined, electronic searches of six databases were conducted, reference lists and key journals were reviewed, and grey literature was searched. Papers were selected based on clear inclusion criteria. Data were extracted from the selected papers, and their quality was systematically reviewed. The review was prospectively registered on PROSPERO: CRD42015016905. Results A total of 15 985 articles were extracted; of these, 17 met the inclusion criteria. The results of these articles were mixed but suggested the presence of some health and well-being issues in this population during transition to adulthood, including obesity and sexual health issues. Conclusion This review reveals a gap in the literature on transition and health and points to the need for future work in this area. [ABSTRACT FROM AUTHOR]

There is an increasing interest in the notion of health disparities, inequities and inequalities in Canada and elsewhere. In Canada, individuals with disabilities represent one of six groups identified as particularly vulnerable to health disparities.This paper combines the literature related to the concepts of inequity and inequality with the body of knowledge on health disparities faced by individuals with intellectual disabilities.The value of distinguishing inequity from inequality, particularly as it relates to the experience of individuals with intellectual disabilities, is highlighted.A framework for the study of health inequities based on intellectual impairment is proposed. [ABSTRACT FROM AUTHOR]

Current policy in UK health services emphasizes that, where possible, people with intellectual disabilities should access the same services as people without intellectual disabilities. One of the barriers to this is the confidence of clinicians and therapists. In this paper, we report on the development of a scale to describe the confidence of therapists in working with people with intellectual disabilities (the Therapy Confidence Scale-Intellectual Disabilities [TCS-ID]). One-hundred and eighty-one therapists who provided talking therapies but who did not work primarily with people with intellectual disabilities completed the scale; 43 people completed the scale twice for test-retest reliability purposes. One-hundred and seven people also completed a scale of general therapy self-efficacy. The TCS-ID has a single factor structure accounting for 62% of the variance, Cronbach's alpha for the scale is 0.93 and test-retest reliability is 0.83. There are significant differences in confidence based upon participants experience in working with people with intellectual disabilities and their therapeutic orientation, and there is a significant association between the TCS-ID and the General Therapy Self-efficacy Scale. Sixty clinicians working in mainstream mental health services received training on adapting their therapeutic approaches to meet the needs of people with intellectual disabilities. The TCS-ID was used pre-training and post-training and demonstrated a significant increase in confidence for all group. We suggest that the scale has good psychometric properties and can be used to develop an understanding of the impact of training for mainstream therapist in working with people with intellectual disabilities. Copyright © 2014 John Wiley & Sons, Ltd. Key Practitioner Message There is increasing emphasis on people with intellectual disabilities receiving services from mainstream mental health services., There is no research describing the experiences and outcomes of people with intellectual disabilities receiving mainstream talking therapy services., The confidence that clinicians have in working with people with intellectual disabilities may be a barrier to them receiving mainstream services., The Therapy Confidence Scale-Intellectual Disabilities is a psychometrically sound scale for measuring the confidence of therapists in working with people with intellectual disabilities and is a useful outcome measure for training clinicians to work with people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Abstract: Despite significant changes to mental health services, nurses remain the professional group most likely to be in close contact with people who experience mental health problems. A core part of the contemporary identity of the mental health nurse is one who is able to provide acceptance and support for an individual's recovery through the therapeutic relationship. Yet there have always been some tensions with the mental health nursing role that can appear to challenge this relational focus. An increasing prominence of risk management in mental health care can position mental health nurses as responsible for enacting restrictions and has reignited interest in the role of mental health professionals in social control. This paper reports on one part of a multiple case study, which aimed to explore mental health professionals’ experiences of such tensions in the context of decision‐making. Interviews and observations were undertaken in acute ward and assertive outreach settings. Findings suggested that risk dominated decision‐making to such an extent it defined the way service users were understood and treated. A distant relationship between professionals and service users helped to create and maintain this situation. There needs to be a greater focus on service users’ subjective experiences in the decision‐making process to challenge the definition of people with mental health problems as risky. [ABSTRACT FROM AUTHOR]

There is an enduring association between socioeconomic position and health, both over time and across major causes of death. Children and adults with intellectual disabilities are disproportionately represented among the poorer and less healthy sections of the population. But research on health inequalities, and on the broader societal influences on health, has yet to be integrated into perspectives and policy for people with intellectual disabilities.The paper reviews evidence on the patterns and causes of socioeconomic inequalities in health.It points to evidence that socioeconomic position is the fundamental determinant of health, drawing on longitudinal studies to highlight how it exerts its influence on health from before birth and across the lifecourse. The factors shaping an individual's socioeconomic position are also discussed.The paper concludes by identifying research and policy challenges. [ABSTRACT FROM AUTHOR]

Accessible summary People with learning disabilities do not live as long as other people or as long as many should., Nationally, people with learning disabilities do not get as good help when they do get ill., This paper looks at work that was conducted in Lincolnshire to see how the health of people with learning disabilities compared to the rest of the population., The report recommended changes which could be made to make things better., Summary The NHS Constitution requires all NHS organisations to provide high-quality comprehensive services, based on clinical need, which do not discriminate between patients (DH 2010a). Together with its health and social care partners, the NHS also has a statutory duty of care to meet the needs of all patients with dignity and compassion. Recent evidence has revealed sharp failures in the NHS to meet these goals in relation to people with learning disabilities nationally. This article considers the well-established evidence that the latter group have worse health experiences and worse health outcomes than the population as a whole, which significantly contributes to marked inequalities both in morbidity and mortality. The public sector equality duty of the Equality Act 2010 imposes a statutory requirement on health and social care agencies to address such inequalities. This article draws on the first systematic health needs assessment ( HNA) of adults with learning disabilities in the county of Lincolnshire, established in 2011 to identify their health needs and make recommendations for improvement. [ABSTRACT FROM AUTHOR]

It is important to be aware of hearing loss as it affects everyday life and gets worse with age in all adults. Many people with learning disabilities do not have their hearing checked, and families or carers often struggle to notice hearing problems. This study summarises previous research on hearing loss and old age for people with learning disabilities. Large numbers of older people with learning disabilities were found to have hearing problems, but smaller numbers were aware of this before testing. Everyone with learning disabilities should be aware of how important hearing is and have regular checks, especially before they reach old age. Hearing loss has a significant impact on living well and on communication in all adults, with the numbers affected increasing with age, and adults with learning disabilities being at particular risk. A review of the literature on hearing loss in older adults with learning disabilities was completed. A significant increase in hearing loss with increasing age in this group was demonstrated, at a greater level than in the general population. Prevalence rates have been the main focus of research, with few considerations of access to hearing assessment or benefits of rehabilitation such as hearing aids, or the effect that age has on living with hearing loss. With advances in audiology services and increased life expectancy of those with learning disabilities, further research would be valuable. In addition, all health and social care services should consider actively promoting hearing assessment and rehabilitation. Individuals, carers and families should also take action, not only when concerns around memory arise, but proactively for all. [ABSTRACT FROM AUTHOR]

Background Despite awareness of the health inequalities experienced by people with intellectual disability, their health status remains poor. Inequalities in health outcomes are manifest in higher morbidity and rates of premature death. Contributing factors include the barriers encountered in accessing and receiving highquality health care. Aims This paper outlines health inequalities experienced by people with intellectual disability and focuses on the opportunities medical education provides to address these. Strategies to ensure that health professional education is inclusive of and relevant to people with disabilities are highlighted. Conclusions The barriers experienced by people with intellectual disabilities to the receipt of high-quality health care include the attitudes, knowledge and skills of doctors. Improving medical education to ensure doctors are better equipped is one strategy to address these barriers. Improving health enhances quality of life, enables engagement and optimizes opportunities to participate in and contribute to the social and economic life of communities. [ABSTRACT FROM AUTHOR]

Rationale, aim and objectives This paper describes the results of the process evaluation of a physical activity programme for people with intellectual disabilities ( ID), including information about the concepts 'fidelity', 'dose delivered', 'satisfaction' and 'context'. Methods Qualitative and quantitative methods among participants and programme leaders were used. Results The programme was well accepted, feasible and applicable to ageing people with ID. It was successfully implemented in terms of fidelity and dose delivered, although differences between day-activity centres were observed. Conclusions The hampering factors that are revealed in this study and the facilitating activities that were part of the implementation plan may be used by care provider services for (ageing) people with ID and other groups of people with cognitive and/or physical deficits, such as frail elderly people or people with dementia when developing and or preparing implementation of health promotion programmes. [ABSTRACT FROM AUTHOR]

Objective Limited data are available on how older adults access public mental health systems. This study examines how uninsured or publicly insured older adults with severe mental illness in San Diego County initially accessed the public mental health system, as well as their subsequent use of public mental health services, as compared to younger adults. Methods Data from San Diego County, 2002–2006, were used to examine how older adults initially accessed the public mental health system, and their utilization over the subsequent 90 days. Multivariate regression models were used to control for demographic and clinical characteristics. Results Older adults (age 60 +) were more likely to access the public mental health system through the Psychiatric Emergency Response Team (PERT), a combined law-enforcement and psychiatric service that responds to psychiatric related 911 calls. Older adults were also less likely to receive follow-up care. This lower rate of follow-up was due to both the initial site of service––and an associated lower rate of follow-up among PERT clients––as well as a lower rate of follow-up among older adult clients initiating services in other sectors. Conclusions This paper suggests two areas for intervention that would improve access to care for older adults: improving linkages and referrals between PERT and outpatient providers; and additional efforts to retain older adults at outpatient programs. Copyright © 2008 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background English policy argues that people with intellectual disabilities should be supported in their local communities. There is considerable evidence that this aspiration is not being achieved. This paper seeks to look at the subsection of people with intellectual disabilities who have expensive care needs because of challenging behaviour, to identify the decision-making processes that have led to current service provision and expenditure and to suggest improvements. Materials and Methods We carried out a survey within five North London boroughs to investigate the characteristics of a cohort of people with intellectual disabilities and challenging behaviour in high-cost accommodation (over £70 000/annum). Postal questionnaires and face-to-face interviews were conducted with stakeholders with intellectual disabilities and patterns of current costs were estimated from existing data provided by the commissioning authorities in the five boroughs. Results Two hundred and five individuals with intellectual disabilities and challenging behaviour were identified. They were accommodated in placements provided by 97 separate providers, both in and out-of-area. Those more likely to be placed out-of-area were younger, had multiple health problems, significant challenging behaviour and mental health problems including autistic spectrum disorders. The local community intellectual disabilities teams identified a number of difficulties in meeting the needs of those service users. Conclusions Expenditure on all placements for service users with intellectual disabilities is significant. There is a notable lack of investment in local service development. A coherent approach is required, often across service boundaries. The authors suggest a model for targeted investment aimed at supporting effective local services, and reducing the need for and expense of out-of-area placements. [ABSTRACT FROM AUTHOR]

The Assessment of Basic Learning Abilities (ABLA) test requires a tester to attempt to teach to a person, using standard prompting and reinforcement procedures, six tasks that are hierarchically ordered in difficulty. Performance on the test provides valuable information for teachers and rehabilitation workers to match the difficulty of training tasks with the learning ability of persons with profound, severe and moderate intellectual disabilities. This paper summarizes the characteristics of the test, outlines the testing procedures, and reviews supporting data and practical guidelines for clinicians. [ABSTRACT FROM AUTHOR]

Aim Recently, attention has focused on the health inequalities experienced by people with intellectual disabilities (ID) when compared with the general population. To inform policies aimed at equalizing health opportunities, comparable evidence is needed about the aspects of their health that may be amenable to intervention. Method Applying the framework of the European Community Health Indicators (ECHI) for the general population, the Pomona group developed a set of health indicators reflecting aspects of the health of people with ID: socio-demographic data, health status, health determinants and health systems. Results This paper documents the procedures that partners carried out in 13 European countries. The process comprised a search for evidence in published literature; consultation with advocates, family members and health professionals; and analyses of national and international databases. Indicators were selected if they were appraised as important, useful, measurable and if resulting data would enable comparisons between the health of people with ID and that of the general population. Conclusion The thus developed indicator set that is aligned with ECHI will permit investigators to compare key aspects of health of people with ID with those of people in the general population within Europe. The final set of 18 indicators will be applied in the Pomona 2 project (2005–08) to gather information about the health of samples of adults in 14 participating European countries. [ABSTRACT FROM AUTHOR]

In the past, preventive health concerning sexuality of people with intellectual disabilities was addressed through surgical sterilization as part of nationwide eugenic programs in many countries. For more than 30 years now, it has come progressively to light in the scientific literature that, besides major ethical and legal problems, these programs also failed to assess many of the individual's needs in sexual health. The fact that an increasing number of people with intellectual disabilities live in the community rather than in institutions has heightened public awareness that these individuals have sexual expectancies, desires, and needs that must be supported through both education and health services. The emergence of AIDS, including descriptions of cases among people with intellectual disabilities, has further demonstrated that surgical sterilization cannot be considered a global option to achieve preventive sexual health. The aim of this paper is to review scientific studies that have assessed the expectancies and support needs of persons with intellectual disabilities in terms of sexual health. These needs vary widely from one individual to another, according to life milieu, level of disability, and potential comorbidity. From this review, it appears that hygiene management, global gynecological care, and prevention of unplanned pregnancy, sexually transmitted diseases, and abuse have been frequently identified as areas in which the presence of intellectual disability dictates specific support needs. Different approaches that have been evaluated to address these issues will also be discussed. MRDD Research Reviews 2006;12:48–56. © 2006 Wiley-Liss, Inc. [ABSTRACT FROM AUTHOR]

In this paper, we first describe the current state of health across the world. We then note that despite general good health, it is not everyone's experience and that differences in health among people frequently appear to be unfair. Health promotion is a movement committed to prevention and to creating opportunities for all people to live healthy lives. We examine the application of health promotion to people with intellectual disability. Finally, we bring equity, health promotion and intellectual disability together and ask to what extent people with these problems are victims of inequity. If they are– as seems likely– societies that have built their health services on humane values should assume greater responsibility for meeting their special needs, promoting their opportunities for health as well as managing their illnesses. [ABSTRACT FROM AUTHOR]

Persons with an intellectual and developmental disability frequently face barriers in accessing preventive services in community-based health care systems. As they age into middle years, they are at increased risk for functional decline. This paper presents a description of an advanced practice nurse (APN) intervention used in a pilot study that explored the feasibility of using an in-home preventive model based on a comprehensive geriatric assessment with persons ageing with an intellectual and developmental disability.The APN intervention was fully provided to a sub-sample (n = 70) of 201 participants with an intellectual and developmental disability enrolled in a programme called‘Stay Well and Healthy!’ The APN intervention included an initial home visit for a comprehensive geriatric assessment with follow-up home visits to review health status and assess adherence with recommendations and provide education and support to promote health and prevent functional decline.Advanced practice nurses identified a number of active health-related problems for persons ageing with an intellectual and developmental disability (mean 5.2; range 1–14) that had potential effects on function and survival. The majority of recommendations (mean 14.4; range 6–35) were for clinical preventive services (42.2%) and self-care for health-related issues (36.8%).This study showed that there were problems consistent with persons ageing with an intellectual and developmental disability and older adults without disability. The in-home preventive APN intervention to promote healthy ageing and reduce health disparities in this population is feasible, needed, and warrants further study. [ABSTRACT FROM AUTHOR]

PRN, or ‘as needed’, medications are administered frequently by mental health nurses in psychiatric inpatient settings to manage difficult and disturbed behaviour when other strategies fail. Research indicates that approximately 50% of psychiatric inpatients receive a PRN medication at some stage of their treatment. Although evidence indicates that traditional antipsychotics and benzodiazepines are equally effective in managing acute agitation and other psychotic symptoms, it has been recommended that benzodiazepines should be the first-line of action because they do not cause the serious side-effects that are common with the traditional antipsychotics. Unfortunately, research indicates that doctors and nurses are not taking advantage of the latest evidence to guide their practice. This paper reviews the limited research available in the area and makes recommen­dations for evidence-based practice. [ABSTRACT FROM AUTHOR]

With the increasing number of adults with intellectual disabilities (ID) surviving into old age governments, provider agencies, and practitioners are recognizing the insufficiencies of available information related to the interaction of the aging process with lifelong disability, the incidence of disease and secondary conditions with advancing age, and the means to provide quality medical and health care. These insufficiencies were noted by a World Health Organization report that identified a need for more research on the health of older adults with IDs and reports from two meetings held by United States Public Health Service and the United States Surgeon General that examined health disparities among adults with ID. This paper reports the process and results of the Tampa Scientific Conference on Intellectual Disabilities, Aging, and Health, a meeting held in 2002 specifically to examine health issues germane to older adults with ID. The meeting produced a long-term research agenda for determining more effective physical and mental health outcomes for aging and older persons with ID and recommendations for aging-related medical and health surveillance practices that would improve the overall health status of adults with ID. [ABSTRACT FROM AUTHOR]

An invitational conference organized by the Netherlands Society of Physicians for Persons with Intellectual Disabilities (NVAVG) and the European Association of Intellectual Disability Medicine (MAMH), in collaboration with the Erasmus Medical Center's Department of Specialist Training for Physicians for People with Intellectual Disabilities, had as its aim the development and issuance of an European manifesto on adequate health care for people with intellectual disabilities (ID). This paper provides an overview of the basis for the conference and the manifesto and lays out recommendations for the implementation of the manifesto's main points. The group's product, the European Manifesto on Basic Standards of Health Care for People with Intellectual Disabilities, summarizes the core elements of adequate health care for individuals with ID, and offers guidance on how Europe's nations may address deficiencies in health provision for people with ID. The manifesto's main points include a call for greater available and accessible health care, increasing the competencies in ID of health professionals, educators, and researchers, a greater reliance on a multidisciplinary approach to health care, more specialist services, and a proactive emphasis on personal health management. [ABSTRACT FROM AUTHOR]

Abstract Background Intimate and personal care is a major area of support and provision for people with intellectual disability (ID), particularly those with profound and multiple ID. However, its management and practice has largely been neglected outside the use of individual guidelines and same-gender intimate care policies, with little research evidence or theoretical literature to inform the planning, conduct and organization of associated care tasks. Results The present paper reports on the methodology and findings of an exploratory study designed to map the key management and practice issues, and suggest ways forward for the providers of services for people with ID in relation to the quality and outcomes of intimate and personal care. [ABSTRACT FROM AUTHOR]

Objective: To explore the stability of conclusions from mental health services research across differing care systems. Contradictory results in different countries for similar studies of programmes for patients with schizophrenia have usually been attributed to poor replication. This paper explores whether these differing results can illuminate aspects of schizophrenia by examining the interaction of the disorder with the care context as an alternative explanation. Method: The findings of a large UK random controlled trial of intensive case management with such patients is compared to previous UK and US studies. Results: Reduction of case-load size of psychotic patients did not significantly reduce their need for hospitalization in the context of locally available co-ordinated care. Conclusion: There is more to be gained in understanding complex disorders such as schizophrenia by interpreting the impact of context on treatment study outcomes than by simply dismissing contradictory findings as failures of implementation of either research or clinical practice. [ABSTRACT FROM AUTHOR]

Objective: This paper describes the development of an instrument for description and classification of mental health services and for measurement of service use. Purposes to be served by the instrument include: (i) identification of gaps in the spectrum of services in a catchment area; (ii) obtaining background information which may be important to understanding why apparently similar interventions lead to different outcomes in different areas; (iii) investigating how introduction of a particular type of service influences use of other local services; and (iv) understanding the relationship between sociodemographic factors and service use. Method: The instrument was developed through meetings of an international expert panel and pilot stages in several European countries. Results: Use of the European Mapping Service Mapping Schedule (ESMS) appears feasible in several countries and allowed description and classification of the full range of services identified within each of the study catchment areas. Conclusion: The ESMS promises to fill a gap in the technology available for mental health services research. Further practical experiences of its use for a variety of purposes in a variety of settings are now needed to indicate how far the ESMS does successfully generate data which are useful to researchers and planners. [ABSTRACT FROM AUTHOR]

The concept of living in an ordinary house in an ordinary street is becoming well accepted by those providing services to people with mental handicaps. Numerous examples have been described, but little in the way of service evaluation has been done. It is important to demonstrate that the quality of life is better in 'smaller units' and that institutional patterns of care are not being reproduced in the community. An observational study of small homely units for adults with mental handicaps has been carried out and has shown that the quality of life is better. This paper reports an observational study of the quality of care in a small staffed house for children with severe learning difficulties. The rate and content of naturally occurring interaction patterns were observed. The Child Management Practices Questionnaire was also administered. The results show that these children are enjoying a better standard of care than that found in hospital studies. However, some management practices were found to be institutionally orientated. For example, there was restricted access to some areas of the house, a lack of personal possessions and staff served and supervised meals rather than eating with the children. The implications of the findings are discussed in relation to recent policy trends and alternative forms of care in the community. [ABSTRACT FROM AUTHOR]

Summary: Background: The literature evaluating multi‐component interventions for long‐term weight loss in adolescents with intellectual disabilities (ID) is extremely limited. Objectives: To compare the effectiveness of two delivery strategies, face‐to‐face (FTF) or remote delivery (RD), and two diets, enhanced Stop Light diet (eSLD) or conventional diet (CD) on weight change across 12 and 18 months. in response to an 18 months. weight management intervention (6 months Weight loss/12 months. Weight maintenance) in adolescents with ID. Methods: Adolescents with ID were randomized to one of three arms: FTF /CD, RD/CD, RD/eSLD and asked to attend individual education sessions with a health educator which were delivered during FTF home visits or remotely using video conferencing. The CD followed the US dietary guidelines. The eSLD utilized the Stop Light guide and was enhanced with portion‐controlled meals. Participants were also asked to increase their physical activity (PA) and to self‐monitor diet, PA and body weight across the 18‐month. intervention. Results: Weight was obtained from 92(84%) and 89(81%) randomized adolescents at 12 and 18 months, respectively. Weight change across 12 months. Differed significantly by diet (RD/eSLD: −7.0% vs. RD/CD: −1.1%, p = 0.002) but not by delivery strategy (FTF/CD: +1.1% vs. RD/CD: −1.1%, p = 0.21). Weight change across 18 months. Was minimal in all intervention arms and did not differ by diet (RD/eSLD: −2.6% vs. RD/CD: −0.5%; p = 0.28) or delivery strategy (FTF/CD: +1.6% vs. RD/CD: −0.5%; p = 0.47). Conclusions: Additional research is required to identify effective strategies to improve long‐term weight loss in adolescents with ID. [ABSTRACT FROM AUTHOR]

Background: Individuals with intellectual disability (ID) are less physically active, have a higher body mass index (BMI) and are at greater risk for cardiovascular diseases (CVDs) than people without ID. The purpose of the study was to explore the effectiveness of a web‐based training programme, consisting of 150 min of activity per week, on the health of people with ID. Method: Participants with ID living in supported accommodation (n = 28, 48% female, age = 36.4 ± 9.56 years) participated in a web‐based training programme, consisting of a combination of exercises (endurance, strength balance and flexibility) of moderate intensity, 50 min, three times per week for 12 weeks. The body composition and waist circumference (WC) were measured, and questionnaires were used to assess enjoyment, quality of life (QoL) and physical activity (PA) level. Descriptive statistics and pairwise comparison pre and post intervention were carried out. Results: A total of 22 out of 28 participants completed the 12‐week training intervention with 83% mean attendance of training sessions. The intensity of the PA level increased and a decrease in fat mass of 1.9 ± 2.4 kg, P < 0.001 and WC of 3 ± 5 cm, P = 0.009 were observed. Enjoyment of training sessions was 3.9 out of 5, and no differences in QoL were found. Conclusion: A web‐based training programme is an effective tool for improving health parameters of people with ID and offers a new way for caregivers to enhance the PA for the target group. [ABSTRACT FROM AUTHOR]

Background: The online mindset intervention The Growth Factory (TGF) has shown promising effects—increasing growth mindsets and perseverance and decreasing mental health problems among youth with intellectual disabilities (ID). Studying moderators and mediators of intervention effects is essential to elucidate for whom and why TGF works. Using a randomised controlled trial design, we examined youth's baseline mindset, gender, age, level of ID and intervention satisfaction as moderators of TGF effects and examined whether the intervention effects of TGF on improvements in mental health were mediated by perseverance. Methods: The sample consisted of 119 participants with mild to borderline ID (Mage = 15.83; SD = 2.23), randomly assigned to the intervention (n = 60) or passive control group (n = 59). Participants reported mindsets, perseverance, internalising, externalising, attention and total mental health problems at pre‐test, at post‐test and at 3‐month follow‐up. Additionally, youth in the intervention group graded their satisfaction with a score at the end of each session. Results: Findings indicated that the effectiveness of TGF was not affected by participants' baseline mindsets, age and ID level. TGF was more effective in reducing internalising problems in girls and increasing perseverance in boys. In addition, in the intervention group TGF was more effective in improving internalising, externalising and total mental health problems for youth who reported higher levels of intervention satisfaction at post‐test. Finally, TGF indirectly decreased internalising and externalising problems at follow‐up through improvements in perseverance reported at post‐test. Conclusions: TGF offers a universal, 'add‐on' mindset intervention complementing usual care programmes. It improves mindsets, perseverance and mental health in youth with ID. Both practical and theoretical implications are discussed. [ABSTRACT FROM AUTHOR]

Introduces articles published in the "Journal of Applied Research in Intellectual Disabilities." Indication of health inequality among people with intellectual disabilities; Disparity in health outcomes between people with intellectual disabilities and their non-disabled peers; Association between disability and poor health.

Background: During the COVID‐19 pandemic, social distancing measures were enforced and the national lockdown underlined our reliance on virtual means as a way to communicate. This new way of interacting highlighted that people with an intellectual disability were a large proportion of a digitally excluded population. Methods: A service evaluation, using a mixed method design in the form of four self‐reported outcome measures and qualitative feedback. Findings: Clinical services need to continue when face to face sessions are not possible. Remote groups can be an alternative option not only when self‐isolating due to pandemics but when living in remote locations, having physical health problems or excessive expenses and travel costs. Conclusions: Online dramatherapy groups can be a beneficial alternative when face to face groups are not possible or challenging to attend due to access difficulties. Online groups can offer opportunities to meet with peers, build relationships, improve confidence and learn new skills in technology. Accessible summary: Groups delivered online, using the internet, are an option for people with an intellectual disability when attending a group in the community is not possible.Online dramatherapy groups can provide people an opportunity to share stories and experiences through creative means.Friendships can be established through facilitated online group platforms.Online groups introduce people to technology and opportunities to learn digital skills that can be used outside the group. [ABSTRACT FROM AUTHOR]

The article discusses biomedical approach to illness and disorders, and risk assessment/management practices have long dominated the delivery of mental health services. While there are numerous and widely used psychotherapeutic approaches, pharmacological treatment either alone or simultaneous with psychological therapies, remain the basis of treatment.

The need for speech and language therapy (SLT) for people with Down syndrome (DS) is well documented. However, there is a significant disparity between research and practice. This study addresses two of the three pillars of evidence‐based practice by 1) quantitatively profiling some key features of the 2019 public SLT service in Ireland, and referencing this against current best evidence; 2) asking parents, and adults with DS what supports they need in relation to an adequate SLT service. Adults with DS (n = 33) and parents of those with DS (n = 557), completed an anonymous survey online. The function of the survey was to collect information on: SLT service provision; levels of satisfaction with services; and SLT supports required. Based on parent responses, only 44% of participants (n = 253) were offered public SLT services in 2019. The mode waiting time was 1–2 years and the average number of sessions across the age groups was 5 per year. There was a strong association between age and number of sessions. Individual therapy was the most common model of service. A total of 40% of parents reported a 0 level of satisfaction. Seven key themes emerged from the qualitative support data. None of the participating adults received public SLT services in 2019. Our aspiration for evidence‐based SLT practice is far from being realized. The average number of sessions reported, does not in any way approximate the intervention intensity specified in evidence‐based interventions. Our limited service, at all ages, has detrimental implications for people with DS and our negligible adult service is in breach of human rights. Targeted, strategic investment is needed to allow practice to be aligned with best evidence; to support and treat people with DS effectively; to allow them to reach their maximum potential; and to exercise their right to communicate. [ABSTRACT FROM AUTHOR]

Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to experience mental health difficulties and face barriers obtaining mental health care. COVID‐related public health restrictions, combined with heightened challenges to obtain timely mental health care, have served to worsen this situation internationally, with a combination of new onset conditions and worsening mental health for those already struggling. In this narrative review, we summarize literature on the mental health of adults with ID during the COVID‐19 pandemic to describe what is known based on clinician perceptions, existing administrative health data, family and staff perceptions, and self‐report. In addition to noting similarities and differences in findings based on the source of information, we also explored how experiences differed depending on where and when the research was conducted. Based primarily on research conducted during the first six months of the pandemic, there is a consistent finding across sources of increased anxiety, stress, and isolation. This review also explored the delivery of virtual mental health care and the impact of pandemic‐based mental health interventions. There have been very few research studies evaluating clinical care during this time but clinicians have managed to provide supports virtually, which has been evaluated positively by some individuals. This narrative review concludes by identifying gaps in the literature and suggests key directions for future mental health research, policy, and practice efforts. Any mental health efforts now and during pandemic recovery need to have an understanding of how the mental health needs and services for adults with ID have evolved over the course of the pandemic. Further research is needed on the impact of both clinical interventions and other nonclinical efforts on the mental health of people with ID. [ABSTRACT FROM AUTHOR]

Background There is growing evidence that people with intellectual disabilities have greater healthcare needs than the general population and that these needs are often unmet. Recently, increasing attention has been drawn to poor care received by people with intellectual disabilities when admitted to hospital. Method A literature search was conducted to identify studies on experiences of secondary healthcare for people with intellectual disabilities. Studies were published between January 1990 and March 2008. Results Thirteen studies were identified. Important influences on the experience of hospital care were: individual factors; the carer’s role; the attitudes, knowledge and communicative style of health staff; and the physical environment. A range of recommendations and initiatives have been developed to improve hospital care. Conclusion More research is needed, given that so few studies are published in this area. Initiatives to improve access to secondary healthcare need to be evaluated to inform the development of services. [ABSTRACT FROM AUTHOR]

Objective: To compare different perspectives on evidence in relation to mental health care. Method: The method and materials constitute a selective literature review comparing key elements of evidence-based medicine and evidence-based policy with perspectives on evidence from users, carers and professionals. The aim was to develop an argument concerning these comparisons. Results: What constitutes evidence from the perspectives of different stakeholders is a field of contestation. Conclusion: It is timely for a multiple perspective paradigm on evidence in science to be developed and this paper initiates this process in relation to mental health care. [ABSTRACT FROM AUTHOR]

Diurnal bruxism among individuals with intellectual disabilities is often measured on the basis of its auditory products, thereby precluding the contingent presentation of stimuli during silent bruxism events. Electromyography (EMG) offers a technological solution to the identification of all bruxism events. EMG has not been previously evaluated in nonvocal clients with intellectual disabilities in the context of functional analysis and treatment. In the current series of analyses, we suggest a set of methods to implement EMG technology with this population. In Analysis 1, we propose a strategy for systematically identifying bruxism events. In Analysis 2 we evaluate an EMG staff-training package with naïve interventionists without past experience with EMG technology. Finally, Analysis 3 presents a practical example of this method during the functional analysis and treatment of a client with frequent diurnal bruxism. [ABSTRACT FROM AUTHOR]

Accessible summary: People with severe and profound intellectual disabilities need others to support them in most areas of their life. It can be difficult to communicate with people about change and transitions have been identified as an area of concern.As part of this research, we spent time with six adults with severe and profound intellectual disabilities. We talked to their families and professionals about their transitions and how they were involved in decisions that were made. Relationships people had with family members and key staff facilitated their engagement and experiences of the world.Our findings show that it is important that those who know the person well are closely involved in the planning of transitions. There should be a greater focus on maintaining the relationships that people have so that we can build bridges between settings and improve transitions for people with intellectual disabilities. Background: Within the current literature, there is a focus on early transition experiences, such as people's school years, while adulthood remains a lesser researched chapter in the lives of people with intellectual disabilities. Furthermore, most studies focus on those with mild or moderate intellectual disabilities and people with severe or profound intellectual disabilities are often excluded from research. Methods: This article explores the transition journeys of six adults with severe intellectual disabilities, including transitions from school to adult services and moving out of the family home. Data collection involved observations, document reviews and interviews with families and professionals in Scotland. Taking an ethics of care perspective, our focus was to explore in how far each person had people in their lives able to listen to them and if, in turn, those close to them were listened to during times of transition. Findings: Our findings demonstrate that transitions are complex processes that occur across different systems. Additionally, our findings emphasise the importance to consider relationships that are available to people within their adult lives when planning and supporting transitions. Combining interviews with observations helped us to see how the six adults showed agency and were communicating their preferences through the relationships they had with people within their immediate environment. Conclusions: The need to reconceptualise participation from a relational and interdependent perspective is stressed to facilitate the involvement of people with severe intellectual disabilities within decision‐making processes. [ABSTRACT FROM AUTHOR]

Background: Concerns have been expressed regarding the impact of Transforming Care (TC) an English deinstitutionalisation mandate, on forensic services. With nursing staff positioned as significant in delivering TC; this research explored nursing experiences. Method: Nine face‐to‐face semi‐structured interviews were completed with nursing staff working in either inpatient or community forensic teams. Multi‐perspectival interpretive phenomenological analysis was used to explore participants' experiences. Interviews were analysed independently, prior to a mini meta‐synthesis. Results: Participants from the inpatient group experienced TC as a threat, which resulted in consistency of perspective and practice. Participants from the community group viewed TC as a worthwhile challenge, which presented opportunity. The community infrastructure was experienced as inadequate by both groups, with the needs of people in forensic services needing more consideration, leading to widespread frustration. Conclusions: The blanket approach of TC may not be suitable for this population, with those leading TC perceived as naïve. [ABSTRACT FROM AUTHOR]

Planning for the future is important for individuals with intellectual and/or developmental disabilities (I/DD) and their families. When caregivers are no longer able to provide support, individuals with I/DD may experience loss of services or benefits, residential or employment‐related disruption, or other adverse consequences. Up until now, most future planning related interventions and approaches have been focused on directly supporting families and individuals with I/DD. We present findings from a training intervention designed for professionals who work with individuals with I/DD and their families, suggesting that future planning be included in service provision and community outreach. Training participants increased their confidence in helping families plan and their likelihood to take action after participating in a 1‐day training. We discuss the implications of developing disability professionals as allies and resources to families as they engage in future planning activities. [ABSTRACT FROM AUTHOR]

The present paper describes a cross-sectional study of the psychosocial adjustment of 143 children with severe disability and their families identified from a regional case register for children with special needs. Thirty-eight per cent of the children had significant psychiatric morbidity. By contrast, the overall level of distress in carers was not that different from probable community prevalence figures. Nevertheless, distress among carers was consistently associated with increased disability in the child. Although respite care is a valuable resource for many carers, its use is indicative of underlying distress in the carer. [ABSTRACT FROM AUTHOR]

Community mental health centers were created to provide mental health services within the community. However, these centers have had difficulty delivering community-based services and have, all too often, become isolated from the communities they serve. A model for the role of professional liaison is presented. The liaison model is seen as providing a solution to service delivery problems by acting as an adjunctive agency providing broadly based referral and linking services between agencies in the community. Essential features of the liaison role include an ecological perspective, indirect service delivery, an emphasis on liaison role rather than technique, and the inappropriateness of advocacy. [ABSTRACT FROM AUTHOR]

A major objective in the development of mental health services has been to provide treatment as early as possible in the course of the illness. In order to achieve this objective, it is necessary both that adequate treatment services be available and that they be perceived as necessary by the patients and/or his family. This article focuses on the steps by which hospitalization itself is arrived at. These are clearly two aspects of the same phenomenon which cannot be wholly separated: actions taken depend on what the actors see as the nature of the problem facing them, and in turn perceptions as to the nature of the problem are modified by the actions and interpretations of others involved in the process of dealing with the patient.

With few exceptions, studies of the families of mental patients have been focused on the parental family of the patient in an effort to trace the etiology of the illness. Almost no systematically collected data exist to permit an analysis of what happens within the family group when a member develops a mental illness. It is the aim of this article to study the problems which the family faces when one of its members becomes mentally ill and is hospitalized in a mental hospital. Systematic data were obtained on: (1) the process whereby the illness is defined; (2) the course of the family's functioning during the illness, in terms of its members' attempts to cope with the situation, both psychologically and materially, and; (3) the ways in which family members relate to each other, the patient, the hospital, and the society.

Background: During the COVID‐19 outbreak, service providers in the Netherlands had to switch towards providing remote support for people with intellectual disabilities living independently. This study aims to provide insight into the use of online support during the outbreak. Methods: We analysed quantitative data on planned and unplanned contacts between the online support service DigiContact and its service users. Results: The results indicate that the COVID‐19 outbreak and the related containment measures had a strong impact on online support use, specifically on the unplanned use of online support. Conclusion: Offering online support as a standard component of services for independently living people with intellectual disability enables service providers to be flexible and responsive towards fluctuations in both support needs and onsite support availability during a social crisis such as COVID‐19. [ABSTRACT FROM AUTHOR]

Care providers within human services organizations have many job responsibilities and performance expectations. In the present study, we conducted social validity assessment with 78 care providers concerning their attitudes and opinions about behavior data recording with adults who had intellectual disability and lived in community group homes. Specifically, the care providers responded to a written questionnaire that inquired about the practicality, training/supervision, and value of behavior data recording in the context of service delivery. Results indicated generally high approval of behavior data recording practices, purposes, and approaches to training. We discuss implications of these findings for implementing data recording by care providers and the contribution of social validity assessment to training and performance management within human services organizations. [ABSTRACT FROM AUTHOR]

Telehealth uses electronic information and telecommunication technologies to deliver long‐distance clinical services. It has successfully been used by clinical professionals to teach family and staff members to provide evidence‐based assessment and treatment procedures. There is no research to date, however, evaluating the use of telehealth to directly teach individuals with intellectual and developmental disabilities (IDD). Thus, we evaluated the efficacy of a telehealth intervention using total task chaining with least‐to‐most prompting delivered via videoconference to 2 adults with IDD. Both participants demonstrated low independent responding during baseline with enhanced written instructions present. During intervention, which included vocal and model prompting, both participants met the mastery criterion for each skill in fewer than 15 sessions, which maintained after 2 weeks. Finally, both participants expressed satisfaction with the goals, procedures, and effects of the intervention. We discuss the broader scope of the intervention for individuals with disabilities when face‐to‐face services may not be feasible. [ABSTRACT FROM AUTHOR]