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The article discusses the commentary on a stimulus paper which discusses the medical practices that objectively question human life affected by intellectual and developmental disability (IDD). Topics include growth in offering commercially available blood tests to screen for genetic abnormalities in pregnant mothers in some countries, resulting in abortions; and exploring how the decision is taken to legally terminate premature babies with severe disabilities and life threatening conditions.

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]

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]

A growing body of knowledge highlights the negative impact of the COVID‐19 pandemic on the health and well‐being of many people with intellectual and developmental disabilities (IDDs) and their caregivers. The underlying reasons are not only due to biomedical factors but also ethical issues. They stem from longstanding and pervasive structural injustices and negative social attitudes that continue to devalue people with IDD and that underlie certain clinical decisions and frameworks for public‐health policies during this pandemic. Unless these fundamental ethical shortcomings are addressed, pandemic responses will continue to undermine the human rights and well‐being of people with IDD. This paper proposes an ethics framing for policy and practices regarding clinical care and public health based on Martha Nussbaum's approach to Capability Theory. Such a framework can reorient healthcare professionals and healthcare systems to support the capabilities of people with IDD to protect, recover, and promote health and well‐being. It could be applied during this pandemic and in planning for future pandemics. The paper presents some practical recommendations that follow from applying this framework. [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]

The Italian healthcare system is public and freely available to the population. With a few exceptions, there are no distinctions between the healthcare services and practices (e.g., primary care) designed for the general population and those for individuals with intellectual and developmental disabilities (IDD). Prevalence data on adults with IDD are lacking and most disability policies and resources are designed for people with disabilities broadly defined, without specification based on disability type or severity level. Recent legislation provides specific supports for individuals with severe disabilities or autism spectrum disorder. This paper describes the legislation and health policies developed for people with disabilities, the organization of the Italian healthcare system, and the organization of disability support services and healthcare services. Strengths (e.g., availability of many financial resources, adoption of biopsychosocial approach to disability, presence of innovative projects to address the healthcare needs of people with IDD) and weaknesses (e.g., lack of distinction among disability types, territorial differences, lack of disability training of healthcare providers) of the current healthcare practices are reported and discussed. [ABSTRACT FROM AUTHOR]

This paper aims to give a short description of Swedish healthcare provision for persons with intellectual and developmental disabilities (IDD). Swedish persons with IDD should have access to the general healthcare system on the same terms as the general population, and thereby enjoy equal opportunities for healthcare of good quality. Reports from government agencies and interest groups, however, describe a decentralised and fragmented healthcare system that requires significant coordination; a lack of adjustments; a lack of specialised healthcare professionals; and gaps in healthcare provision. Research in recent years has reported unequal access to planned healthcare; excess mortality and premature deaths; and insufficient or inadequate support in end‐of‐life care. We conclude that health inequalities and healthcare challenges faced by Swedish persons with IDD might be caused by obstacles at several structural levels. Allowing persons with IDD to access timely and adequate healthcare requires the development of better opportunities for coordination of healthcare and social services, as well as training for healthcare professionals and direct support staff. [ABSTRACT FROM AUTHOR]

Irish health and social care policy has undergone a significant evolution in recent years to address inequalities, improve standards and update models of care to incorporate a rights‐based approach. The following account describes the Irish health and social care system, as delivered in the Republic of Ireland, and details how it operates for those with intellectual and developmental disabilities. The paper is informed by government policy, legislation, reviews, national plans, parliamentary reports, and population data. Clear progress has been made in shifting from a service‐led to a rights‐based, service‐user led model of care; however, resourcing this fundamental transition in approach to service provision poses challenges for the Irish State. [ABSTRACT FROM AUTHOR]

Family quality of life (FQOL) is a multidimensional social construct that can be used to enhance a family's well‐being by providing a framework to plan interventions and evaluate outcomes. Although researchers and policymakers see value in the FQOL domains and dimensions, families and practitioners are often skeptical of lengthy evaluations and aggregate scores. Furthermore, many practitioners find that family caregivers who require support and services overwhelmingly focus on the family member needing the most care. In doing so, they perceive their situations in a "spaghetti‐like" way. This strong focus on one aspect of the situation, or one "spaghetti" strand, can result in conversations about planning and implementing interventions becoming cyclical, like a messy tangle of strands. The FQOL lens can be used in intervention planning to transform overlapping spaghetti‐like thoughts into a waffle‐like system of interconnected and compartmentalized thoughts. The purpose of this paper was to describe the individual‐level application of the FQOL theory to plan and evaluate the benefits of a peer‐mediated family empowerment project for aging caregivers of adults with intellectual/ developmental disabilities in Michigan, USA. The study provides examples of how individual‐level FQOL evaluation at pretest informed the development of individualized action plans that focused on the strengths, desires, and challenges of 100 aging families in this statewide project. [ABSTRACT FROM AUTHOR]

Legislations for persons with disabilities emerged in the 1990s in India, providing them with rights and entitlements. Aligned with the UNCRPD, the Rights of Persons with Disabilities Act (2016) supports improved programmes and services. There are no exclusive policies for those with intellectual and developmental disabilities. Different government departments and non‐government organisations provide services including centrally sponsored programmes to persons with disabilities and enable them to exercise their rights. For example, rehabilitation and provision of aids and appliances lie with the Ministry of Social Justice and Empowerment, right to education is with the Ministry of Education, and, early intervention and health services and related supports are with the Ministry of Health. In India, non‐government organisations also play a vital role in health care services. In this paper, we discuss the existing health care systems including medical services in India for persons with disabilities with a specific focus on persons with intellectual and developmental disabilities. The discussion include how the system was evolved and what is in place today, the coverage, strengths, and limitations in the system. We have tried to provide a comprehensive description of existing policies, and practices of health care as well as the cultural influences with regard to health care for people with intellectual and developmental disabilities in India. [ABSTRACT FROM AUTHOR]

In this paper, we discuss the applicability of the consensus document, prepared by the Special Interest Research Group on quality of life (QoL) of the International Association for the Scientific Study of Intellectual Disabilities in August 2000, for persons with Profound Intellectual and Multiple disabilities (PIMD). We compare our findings from previous empirical research with some elements of the themes and principles of the consensus document. We will reflect (1) on the domains of QoL mentioned in the consensus document, and (2) on the assessment by proxies. We recommend reflection on the following aspects when composing a new consensus document, which includes QoL of persons with PIMD: first, reconsider whether all eight domains are useful in care practice for—and research about—persons with PIMD. We assert that the domains of health, well‐being, capability to influence the environment, and also (family) relationships, are particularly relevant for the QoL of persons with PIMD and, second, accept interpretation of signals and signs by proxies in the assessment of QoL in persons with PIMD and do not value this as second best. [ABSTRACT FROM AUTHOR]

COVID‐19 has very publicly had profound impacts on the health system of every country in the world. Over 4.5 million people have lost their lives. School closures worldwide where up to 1.6 billion of the world's children have been out of school, are also prominent in world news. Behind these public impacts are the families. In this paper, we focus on the experiences of families with people with intellectual and developmental disabilities (IDD) through analysis of two data sets: the emerging research literature and contributions from our author team who have lived experience of intellectual and developmental disability in the context of COVID‐19. From these two data sets, we discern five themes of the impact of the pandemic: on health, on education, on services and supports, on families and finally on relationships beyond the family. We conclude with lessons from those living with intellectual and developmental disabilities, the carers and the individuals themselves to draw implications for supporting families in the context of disability during future pandemics. [ABSTRACT FROM AUTHOR]

People with intellectual and developmental disability (IDD) are a vulnerable population in all aspects of access and participation, abuse and neglect, and being subject to the use of restrictive practices. Accordingly, they are a group whose human rights can be impacted where equal access to supports, services, and accessible information is compromised. The current COVID‐19 pandemic is a global humanitarian emergency that has had a devastating impact across the world, for all people. Growing concern has been raised about the impact of the COVID‐19 virus on the health of people with disabilities and there has been subsequent development of strategies and protocols to promote equal access to information, health supports, and services. People with IDD have high levels of underlying comorbidity that increases their risk of contracting COVID‐19 and measures to protect them from infection are critically important. However, those measures may trigger behaviors of concern and increase the risk of being subjected to restrictive practices. While some attention has been paid to the health impacts of COVID‐19 on people with disabilities, there has been less paid to the impact on the human rights of people with IDD who present with behaviors of concern. The aim of this paper is to provide a hypothetical exploration of the impacts of pandemic prevention measures on people with IDD and behaviors of concern in the context of the Convention on the Rights of Persons with Disabilities (CRPD). In the absence of available guidance for working with people with IDD with behaviors of concern during COVID‐19, we suggest behavior support response plans that aim to ensure that people with IDD with behaviors of concern are supported properly in a time of significant disruption for them, thereby safeguarding their human rights. [ABSTRACT FROM AUTHOR]

Across Asia, countries have signed the UNCRPD and to a greater or lesser extent are pursuing inclusive education (IE). In this article, we present case studies from Singapore, Indonesia, Philippines, and China analyzing them for common themes around the education of students intellectual and developmental disabilities (IDD), and noting commonalities, challenges, and emerging issues. While the definition of IE (being the philosophy, process and practice of welcoming, valuing and supporting all learners in general education environments) and the conceptual distinction between integration and segregation are clear in the UNCRPD and subsequent comments, the terminology used in some of the countries is inconsistent with these definitions. This makes interpretation of reports from government instrumentalities difficult. In some cases, misuse of terminology allows justification of practices that are contrary to the UNCRPD. Terminology differences coupled with challenges of finding data related to the education of children with IDD, if the data exist, make a regional analysis of progress towards IE complex. In our paper, we have drawn on previous reviews and reports to discuss common issues and make suggestions for ways forward. Our findings add to the few other reviews from Asia on IE and draw attention to the continuing need for improved access to any education at all for learners with IDD. Provision of IE is caught up in dilemmas in the region about teacher preparation and professional learning, and how to provide specialist support in inclusive settings. School structure decisions including staffing provision and class sizes affect the education outcomes of students with IDD. School leadership, with the fundamental role of translating policy into practice, is critical for the development of IE and must be aligned with system and country priorities. Collaboration across the region has the potential to share best practice and continue to improve the educational opportunities for learners with IDD. [ABSTRACT FROM AUTHOR]

This paper considers recent developments in terminating human life affected by intellectual and developmental disability. It brings these developments together under the heading of a progressing eugenics. It argues that the acts under discussion are eugenic with regard to their moral justification, even if not in their intention. Terminating human life in contemporary society is aiming at the alleviation of suffering, not the enhancement of the human gene pool. Three distinct cases are traced in the literature: ending the lives of severely disabled prematurely born infants, terminating pregnancies after positive outcomes of genetic screening and testing, and ending the lives of persons with IDD by means of euthanasia. It is shown from the literature that in each of these cases the justifying reason is the prospective judgment of a 'poor' quality of life, which ties these acts to the justification of terminating human life within the history of eugenics. The pervasive judgment of poor quality of life is criticized as ignoring alternative views, most of all the views of persons and families directly implicated who do not consider living with IDD identical with a life full of suffering. [ABSTRACT FROM AUTHOR]

The article presents the discussion on containing eight peer-reviewed articles focusing on services and supports. Topics include family supporting interventions and policies responsive to the increasingly culturally and linguistically diverse environments where individuals with IDD live; and perspectives of providers and families of Iraqi and Syrian people with disabilities on the experiences with services.

Recent work in Ontario (Canada) revealed that adults with intellectual and developmental disabilities experience higher rates of frailty and use of aging care services at earlier ages than the general population, and that the subset aged 65+ years is increasing. This paper describes the reaction of knowledge users to study findings and implications for policy and practice. A knowledge transfer webinar was held with nearly 200 people representing different regions of the province, participant types (family members, service providers, decision makers, researchers), and sectors (health and developmental services). Most participants viewed health and developmental services systems as not ready for the aging population with intellectual and developmental disabilities for two main reasons: insufficient cross-sector expertise and inadequate funding. The need for healthcare, challenged informal supports, lack of services, and the desire for independence were thought to drive higher use of home care among younger adults, while inadequacies within the developmental services sector, challenged informal supports, medical and care needs, lack of community supports, and the need for coordinated cross-sector services were noted as contributing to admissions to long-term care. There is a lack of evidence-based information on aging and intellectual and developmental disabilities. Ongoing access to quality, population-level data on the number and needs of persons with intellectual and developmental disabilities is needed to improve policies and practices to support aging in the community. Persons working in health and developmental services had a shared understanding of the need for system reform, better collaboration, and integration of resources. Both sectors also viewed admission to long-term care as particularly problematic. The province-wide webinar brought together persons with various levels of responsibility from different sectors. Future exchanges should focus on identifying and promoting best practices. [ABSTRACT FROM AUTHOR]

Community-based healthcare services have quickly evolved over the last few decades to respond to the growing population of older adults, and their desire to remain independent in the community. In Ontario, Canada, deinstitutionalization has resulted in all persons with intellectual and developmental disabilities living-and aging, in the community. This paper compares use of home care services in Ontario among adults (age 18-99 years) with and without intellectual and developmental disabilities over time. Home care use over a 5-year period was compared between a cohort of 46,008 adults with intellectual and developmental disabilities and a random sample of 3,272,080 adults without intellectual and developmental disabilities. Persons with and without intellectual and developmental disabilities received similar types of home care services. Adults with intellectual and developmental disabilities had much higher rates of admission to home care, and at much earlier ages. While this remained true over time, slight differences by age were noted between groups. Higher use at earlier ages suggests that home care services are responding to the needs of adults with intellectual and developmental disabilities. Future research should identify (or develop) best practices for promoting independence in the community for adults with intellectual and developmental disabilities with healthcare needs. [ABSTRACT FROM AUTHOR]

Adults with intellectual and developmental disabilities often experience premature aging and high levels of frailty. Frailty characterizes health complexities and identifies adults with increased risks for adverse outcomes. This paper compared the prevalence of frailty amongst adults (aged 18-99 years) with and without intellectual and developmental disabilities. Frailty was measured using the Frailty Marker, based on the Adjusted Clinical Groups-Predicative Model, and was compared between a cohort of 51,138 adults with intellectual and developmental disabilities and a random sample of 3,272,080 adults without intellectual developmental disabilities. Approximately 9% of persons with intellectual and developmental disabilities were frail, compared to only 3% of persons without intellectual and developmental disabilities. Women, older adults, and adults with mental illness or addiction(s), were more likely to be frail. Adults with intellectual and developmental disabilities are increasingly vulnerable as they age. However, to appropriately characterize frailty in this population, measures should be more inclusive of health characteristics and fluctuations that are related to frailty. Future research should investigate alternative measures of frailty for persons with intellectual and developmental disabilities, including measures derived from standardized health assessments, to meet the needs of the aging population. [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]

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]

The article presents abstracts from the Special San Raffaele-Tosinvest Scholar Award Symposium at the 14th World Congress of the International Association for the Scientific Study of Intellectual Disabilities on topics related to developmental disabilities including lessening disparities in healthcare provisions to the developmentally disabled, bereavement in the developmentally disabled and a study of age-related behavioral changes.

Family care provision is the norm for adults with intellectual and developmental disabilities (I/DD), even as they and their support networks grow older. As families age together, the role of primary carer frequently transitions from the parent to a sibling, as aging parents die or become too frail to provide continued support. The purpose of this paper is to explore the transition in care from the perspective of a sibling who has replaced parents as the primary carer for an individual aging with I/DD. Data are drawn from semi-structured, in-depth interviews with a sample of adults over age 40, living in the United States, and caring for a sibling with I/DD (n = 15). Data were analyzed using a constant comparative qualitative approach. Results reveal themes impacting the adjustment to the role of primary carer, the extent to which aging transformed the content of care needs, the importance of planning, and the availability of supplementary support. Findings from this study underscore the need to develop long-term services and supports as well as educational resources that accommodate this population of carers as they age together with their sibling with I/DD. [ABSTRACT FROM AUTHOR]

Persons with intellectual and developmental disabilities (I/DD) face barriers and disparities at end of life. Among these barriers are limited educational opportunities and a paucity of targeted training materials on palliative care for staff who provide their day-to-day care. This paper reports on a three-phase project undertaken to develop, implement, and evaluate a palliative care curriculum and educational program that is responsive to the unique learning needs of staff providing services and supports for individuals with I/DD living in long-term care settings. Participants' ratings of their levels of preparation and confidence to provide palliative care improved from pretraining to posttraining. Posttraining use of materials and practice changes in palliative care occurred. When training is developed in partnership with the staff who will use these training resources, it has the potential to sustain its use and to alter the care practices to address the palliative care needs of persons with I/DD. [ABSTRACT FROM AUTHOR]

The 16th Annual Roundtable of the International Association for the Scientific Study of Intellectual Disability's Special Interest Research Group on Aging and Intellectual Disability was held May 31 and June 1, 2007 in Oslo, Norway, with over 50 participants from Asia, Europe, North America, and Australia. The roundtable theme was “Models of practice: Research and current practice in supporting aging adults with intellectual disabilities.” The Norwegian Development Program, “Aging in People with Intellectual Disabilities” (UAU) at the Aging and Health Norwegian Centre for Research, Education and Service Development organized and sponsored the roundtable, under the leadership of Frode K. Larsen and Britt-Evy Westergaard. The program featured papers reporting burning issues and cutting-edge research on aging and intellectual disabilities organized into six symposia, “Communication,”“Service Developments,”“Dementia,”“Relationships,”“Health and Risk Factors,” and “Work in Progress,” as well as a generic topics poster session. [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]

Numerous countries have recognized the need for improved surveillance data on the health of persons with intellectual and developmental disabilities (IDD). Federal agencies need additional information about the prevalence and health of persons with IDD to guide decisions about policies and programs. Without such data, health inequities and health needs of people with IDD can go unrecognized and be ignored, and resources may be misdirected. The priority areas for needed information, however, have not been well documented. To determine priorities for health data for persons with IDD, we conducted focus groups with three types of stakeholders from around the United States: researchers/practitioners, adults with IDD, and family members. Focus group dialogue was coded for themes and compared across stakeholder categories. Themes common to all groups included valuing people with IDD and respecting their self‐determination; affirming the need for data including longitudinal data; holding a holistic view of physical, mental, social, and sexual health; and access to quality health care, medications, and assistive equipment. Each group also contributed unique ideas such as importance of trust for disclosure of private information, stereotypes and discrimination, and social influences on health. Stakeholders identified specific health conditions to monitor, including COVID‐19. Findings have implications for establishing a health surveillance data system and for practice more generally. Health needs to be considered holistically, including physical, mental, social, and sexual health. A data framework needs to extend beyond a cross‐sectional comparative framework to include longitudinal tracking and monitoring conditions unique to persons with IDD. People with IDD may not trust nor disclose sensitive information about their disability and health to support persons and surveyors, which has implications for under‐reporting of prevalence of IDD and validity of proxy‐reporting. Input from multiple stakeholders is fundamental to developing a usable and relevant data collection system. [ABSTRACT FROM AUTHOR]

Siblings' interactions and shared experiences influence their perceptions of quality of life. Recently, research about siblings of children with intellectual and developmental disabilities has been significantly expanded but data from Southern European countries is still missing. This research was carried out in Catalonia (northeast Spain) a region in the Mediterranean area with its own shared culture, language and traditions that equally embraces an important diversity of ethnicities and cultures. The main aim was to collect siblings' perceptions on quality of life from siblings' own voices. Semi‐structured interviews were conducted with 14 siblings aged 5–11 years old and thematically analyzed using the following domains: joint activities; mutual understanding; private time; acceptance; forbearance; trust in well‐being; exchanging experiences; social support; and dealing with the outside world. Siblings reported a variety of experiences in relation to having a brother or a sister with intellectual and developmental disabilities (I/DD), including unique characteristics of their quality of life perceptions. There were also some common factors amongst the siblings' experiences, such as the importance of being able to communicate properly with their brothers or sisters with I/DD. It emerged that having their own time with their parents was an important factor in their own development. This research echoes some siblings' beliefs that society needs to provide a conscious revision of values and ideas regarding disability. Implications for research and practice are described. [ABSTRACT FROM AUTHOR]

Despite the fact that there is a growing body of knowledge about how to effectively teach reading to students with intellectual and developmental disabilities (IDD), little is known about how teachers of these students are being trained in early literacy skills and implementing these practices in the classroom. As knowledge of the capacity of these student's ability to read grows, we need to know whether teachers' beliefs about their potential reading ability are changing as well. Teacher members of the Division on Autism and Developmental Disabilities, a subdivision of Council for Exceptional Children, were sent a survey that asked questions regarding training, instruction practices, and beliefs around literacy instruction. Results indicated teachers are receiving training in literacy instruction that is not always consistent with what they are implementing in the classroom. Additional results, implications, and recommendations are provided. [ABSTRACT FROM AUTHOR]

The W orld R eport on D isability addresses the education of students with disabilities and recommends that institutional transformation is needed to facilitate inclusive education. The success of inclusive education depends largely on a country's commitment to adopting appropriate legislation, developing policies, and providing adequate funding for implementation. The Republic of Ghana's policies include children with 'nonsevere special education needs' in mainstream schools. The authors examine the definition of disability employed in Ghana's policies to assess whether students with intellectual and developmental disabilities are eligible to benefit from these provisions. Ghanaian government and relevant disability-based organizations' documents related to disability and education were identified and examined as to how the policies support inclusion. The definitions were reviewed via the use of a biomedical or social perspective of disability. Of seven policy documents reviewed, three defined disability and the definitions reflected the biomedical perspective of disability. In the absence of definitions of disability in the majority of the Ghanaian policy documents reviewed, it is difficult to determine which children and with what types of disability will qualify to benefit from their provisions. [ABSTRACT FROM AUTHOR]

International covenants and domestic social policies in most developed countries regard people with intellectual disability as citizens with equal rights, suggesting they should have the similar aspirations of a healthy and active old age as the general community, and an expectation of the necessary supports to achieve this. This article compares the development and implementation of accommodation support policies for people aging with intellectual disabilities in five liberal welfare states. It describes the limited development of policies in this area and suggests possible reasons why this is the case. A review of the peer reviewed and grey or unpublished advocacy and policy literature on aging policies for people with intellectual disability was conducted which covered Australia, Canada, Ireland, the UK, and the U.S. Despite consistent identification of similar broad policy issues and overarching goals, little progress has been made in the development of more specific policies or implementation strategies to address issues associated with accommodation support as people age. Policy debates have conceptualized the problem as aging in place and the shared responsibility of the aged-care and disability sectors. This may have detracted from either sector leading the development of, or taking responsibility for, formulating, implementing, and resourcing a strong policy framework. [ABSTRACT FROM AUTHOR]

This article focuses on the report "Closing the Gap: A National Blueprint for Improving the Health of Individuals With Mental Retardation." In this report, people are introduced with the fact that recent years has seen an increasing life expectancy of people with intellectual disability and today more people staying with their families or in their community instead of the residential care option. The report is intended for officials and workers at the national, state and local level, in both the public and private sector, as an agenda for working together to improve the health of this population.

The author makes the point that there were two aims for considering cultural and social aspects with respect to the extant research on inellectual disabilities. The first is to compare how different societies perceive the value of life for people with intellectual disabilities and to recognize the presence of basic societal traditional values. The second is to raise the awareness and perception of the differences evident in various societies’ policies toward their populations of persons with intellectual disabilities and to focus on the reality of daily life for people with intellectual disabilities. These two facets, cultural diversity and national social aspects, were foundational to the structure of the 2005 Asia-Pacific IASSID conference program, both by how these themes were integrated into the keynote addresses and focal presentations, and how they were promoted through the social program and delegate activities. Within this context, the author describes how these themes, addressed at the conference, could be used to help develop a better understanding of how cultural differences affect research. [ABSTRACT FROM AUTHOR]

Background: Collecting self‐reported health and quality of life (QoL) outcomes is increasingly considered best practice, but people with intellectual and developmental disabilities (IDD) are often excluded from patient‐reported outcome measures. Objective: This article provides a literature‐informed overview of the state of the field of self‐reporting of physical health and QoL in research with adults with IDD. Approach: We first identified and synthesized definitions of key constructs related to the self‐reporting of health. Next, we summarize literature on existing and emerging practices focused on health and QoL assessment, discussing the frequent and sometimes overly broad use of proxy‐respondents in the IDD field. We then highlight emerging directions focused on cognitive accessibility and universal design. Finally, we provide conclusions and recommendations for the field. Conclusions: Informed by the literature, we provide action steps to guide the field in considering how to incorporate self‐reporting of health outcomes by people with IDD in research, policy, and practice. [ABSTRACT FROM AUTHOR]

Background: Behavioral challenges exhibited by individuals with IDD can signal a poor person–environment relationship. There remains limited understanding about the physical characteristics of successful housing for this population. This article summarizes research on housing design for individuals with IDD who engage in behaviors that challenge. Specific Aims: Original, peer‐reviewed research on the physical environment of housing was reviewed to determine the characteristics that can be modified to meet the needs of individuals with IDD who engage in behaviors that challenge. Method: Electronic databases and reference lists of relevant publications were searched for peer reviewed empirical research related to housing design for behaviors that challenge. Two reviewers independently applied inclusion criteria to identify studies. Content analysis identified housing features. Findings: Fourteen studies were identified that described inadequate and successful housing characteristics. Elements such as location, layout, safety, stimulation, and homelikeness were reported to contribute to successful housing. Discussion: Design of the physical environment has important policy and practice implications for supported housing that addresses behaviors that challenge. The development of design tools, guidelines, and personalized housing for this population is discussed. [ABSTRACT FROM AUTHOR]

Siblings have the longest lasting familial relationship. When a disability is present, siblings fulfill unique roles for their brothers and sisters with intellectual and developmental disabilities (IDD). Given their roles, siblings want to be included in service planning; however, it is unclear the extent to which siblings are involved in service planning. The purpose of this study was to examine sibling involvement in service planning meetings. In this study, 422 siblings of individuals with IDD in the United States responded to a national, web‐based survey. Only 36% of siblings had attended a service planning meeting for their brother/sister with IDD. Further, sibling involvement was positively correlated with sibling age, advocacy, future planning activities, and less functional abilities of individuals with IDD. Siblings reported needing certain supports to better participate in service planning; an improved service delivery system, information about navigating adult services, family–professional partnerships, access to support from others, and logistical supports. In this study, siblings reported wanting more support to advocate for their brothers and sisters with IDD. To support these siblings, professionals need to encourage sibling attendance at service planning meetings and provide advocacy supports. [ABSTRACT FROM AUTHOR]

Australia's national legislation and policy have affirmed the right of children with disability, including developmental disabilities to inclusive education. Yet, policy reviews and empirical research have raised concerns about the misalignment between inclusive policy and practice across Australian states. Drawing from these sources, this article endeavors to reflect upon the divide between the Australian policy on inclusive education and inclusive practice by considering the advances, obstacles, and challenges in achieving systemic inclusive education in the Australian education context. In the last part, we offer four propositions that could close the gap between policy and practice and enable students with developmental disabilities to have access and be successful learners in their local mainstream school. [ABSTRACT FROM AUTHOR]

Background: Individuals with intellectual and developmental disabilities (IDD) are at increased risk for adverse experiences and developing posttraumatic stress disorder (PTSD). However, trauma and PTSD in this population are frequently underdiagnosed and undertreated. Despite the availability of multiple types of trauma‐specific treatments for the general population, there is a gap in understanding these collective interventions within the IDD literature. Specific Aims The aim of this article was to conduct a review of the peer‐reviewed literature on trauma‐specific treatment and IDD published from 2008 to 2018. Method: A systematic search of online databases was conducted using Academic Search Premier, MEDLINE, PsycARTICLES, and Social Work Abstracts. A quality appraisal was conducted on the studies included in the review. Findings Twelve articles described four types of trauma‐specific treatments: child–parent psychotherapy, exposure therapy, trauma‐focused cognitive behavior therapy, and eye movement desensitization and reprocessing therapy. All studies demonstrated that the interventions were well tolerated and associated with improvement in trauma symptoms. Eight studies demonstrated sustained improvement at follow‐up, ranging from 6 weeks to 5 years. Discussion Research on trauma‐specific treatments among individuals with IDD continues to present with methodological limitations yet provides considerations for future practice and a foundation for future research. [ABSTRACT FROM AUTHOR]

Issues The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self‐advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long‐term effectiveness of the procedure as an intervention for challenging behavior. Findings The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long‐term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning. Conclusions: Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self‐injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS. [ABSTRACT FROM AUTHOR]

Background: It is becoming more common for siblings to fulfill a caregiving role for their brother or sister, particularly because people with intellectual/developmental disabilities (IDD) are often living longer and outliving their parents. However, most of what we know about siblings of people with IDD is based on research with children, and limited studies on the adult sibling experiences in Canada have been published. To meet the support needs of Canadian adult siblings, "The Sibling Collaborative", a grass‐roots initiative, conducted a needs assessment. Specific Aims The purpose of this study was to better understand the current challenges siblings experience and how requested resources may differ across three age groups: adults between the ages of 20 and 29 years, 30 to 49 years, and 50 years of age and older. Method A total of 260 siblings of individuals with IDD from across Ontario completed an online survey. Findings Siblings endorsed a relatively low rating of intensity of support that they provided for their brothers or sisters with IDD at the time of survey completion; however, the majority indicated that they intended to take a greater caregiving role in the future. Ratings of support differed by sibling age groups, as did challenges related to supporting brothers or sisters with IDD. Overall, participants reported a range of desired resources and preferred methods of accessing resources. Discussion Siblings' caregiving relationships with their brothers and sisters with IDD differed across age groups. Results from the current study indicate different supports may be needed for different age groups. As policies around the world continue to encourage continued family involvement in caregiving for adults with IDD, it is important to understand how systems can better support sibling caregivers. [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 intellectual and developmental disabilities (IDD) have significantly poorer health than the general population. A key threat to health programs for people with IDD is commitment from stakeholders, especially service organizations. The aim of this study was to explore the role disability service organizations play in promoting the best possible physical and mental health of people with IDD. To do so, this study analyzed secondary Personal Outcome Measures® data from 1,341 people with IDD in the United States using binary logistic regressions. Our findings revealed that organizational supports can play a key role in promoting the health of people with IDD. By paying attention to all of these aspects of health and supports, especially discrepancies in supports, service organizations can work to counteract health disparities in those they support. [ABSTRACT FROM AUTHOR]

Compared to mothers, research into the role and involvement of fathers in families with a child with a disability appears limited. The aim was to scope and critically appraise the available literature, with a focus on fathers' perceptions and experiences of their role in parenting a child with a developmental disability. A systematic search was conducted of research published from 2000 to 2017 that addressed the aim. Articles were included if data were available about fathers' experiences and/or perceptions of their role in relation to a child with disability; those addressing stress responses to fathering only were excluded. Information was extracted for summary. Twenty‐one studies (12 quantitative, 9 qualitative), conducted across 10 countries, met inclusion criteria. Key themes of qualitative studies included the process of fathers adapting to their child's disability, planning for the future, involvement with health services and how their perceptions and experiences shaped their participation in the family. Results of quantitative studies demonstrated differences in experiences of fathers compared to mothers as well as in approaches fathers applied to cope with challenging experiences. The review highlights current gaps in understanding the experiences of fathers and their perceptions about their own roles in parenting a child with disability. There is a need for further research into factors that might influence fathers' participation within their families. [ABSTRACT FROM AUTHOR]

The Convention on the Rights of Persons with Disabilities (CRPD) aims to change attitudes and policies toward individuals with disabilities worldwide and to foster the inclusion and independence of persons with disabilities in society. The current study was designed to assess empirically the extent to which people with intellectual and developmental disabilities (IDD) exercise certain rights in the United States using the National Core Indicators Adult Consumer Survey (NCI‐ACS), particularly to see if items could be scaled to measure certain CRPD articles reliably. An additional aim was to assess the impact of guardianship on the rights of individuals with IDD. NCI‐ACS data were analyzed employing factor analysis, multiple analysis of variance, and regression modeling. These approaches allowed us to assess the relationship between guardianship and rights controlling for known covariates (such as level of ID) on outcomes. Results indicate that the NCI‐ACS contains several items with sound psychometric properties that can assist in measuring certain rights of people with disabilities according to CRPD. Specifically, employment and budgetary agency appear to be areas of rights outlined by the CRPD that the NCI‐ACS can help measure. Finally, the results indicated that people who have an appointed legal guardian are less likely to be employed and to have less social privacy. This study indicates the NCI‐ACS has the potential to measure access to CRPD rights, such as employment and budgetary agency, by people with IDD. More work is needed to evaluate additional promising measures of a wider range of CRPD articles. Alternatives to guardianship need to be examined in order to increase the opportunities for people with IDD to exercise their rights. [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: As individuals with intellectual and developmental disabilities (I/DD) grow older, many siblings anticipate becoming caregivers for their brothers and sisters with I/DD. However, there is little extant research about the caregiving roles of siblings. The purpose of this review was to extend the literature by conducting a systematic literature review about sibling caregiving. To better understand this population, a systematic literature review was conducted about adult siblings of individuals with I/DD to examine the definition of caregiving, sibling caregiving experiences, and correlates of sibling caregiving. In total, 29 relevant studies were identified. Results indicate that there is no consistent definition of sibling caregiving. Further, adult sibling caregivers reported caregiving benefits and challenges. The literature is also mixed with respect to the correlates of sibling caregiving. It is necessary to conduct additional research to understand sibling caregiving for individuals with I/DD. Implications for future research, policy, and practice are discussed. [ABSTRACT FROM AUTHOR]

Abstract: Background: Community‐based participatory research (CBPR) brings academics and community members into research partnerships. Although power is central to CBPR, little is known about community partners' experience with empowerment in CBPR with people with developmental disabilities. We interviewed 15 community partners with and without developmental disabilities about empowerment in CBPR. Community partners identified empowered mindsets and behaviors and CBPR factors that facilitated or hindered their empowerment. Our findings indicate CBPR provides opportunities for people with developmental disabilities to gain and develop important qualities, such as empowerment. However, CBPR partnerships need to be carefully constructed and monitored to fully realize positive outcomes. [ABSTRACT FROM AUTHOR]

Abstract: As understanding of health deficits among people with intellectual and developmental disabilities (IDD) increases, concerns grow about how to develop comprehensive, sustainable surveillance systems to reliably monitor the health of this population over time. This study reviews literature from 12 countries in which retrospective administrative data have been used to estimate population‐based prevalence of IDD, identifies promising practices in that literature, and discusses the feasibility of applying those promising practices to other countries. Administrative data sources can be used to identify the number of people with IDD (numerators) in the presence of population estimates from which people with IDD are drawn (denominators) for discrete geographic locations. Case ascertainment methods, age groupings, data years captured, and other methods vary, contributing to a wide variation in prevalence rates. Six methods are identified from five countries that appear to offer the greatest likelihood of expanded applications. Approaches in which administrative data collections are linked with other population‐based data sources appear promising as a means of estimating the size and characteristics of populations living with IDD in defined geographic locations. They offer the potential for sustainability, timeliness, accuracy, and efficiency. [ABSTRACT FROM AUTHOR]

Background: Young children with a developmental delay (DD) show significant delays in communication and language development. Although several parent-implemented language intervention programs have been developed to facilitate the communication and language abilities of children with a DD, no systematic review has examined the effects of these programs. Method: The literature search for this systematic review focused on parent-implemented early language interventions for children with a DD age 1-5 years. Searches were conducted in PubMed, Scopus, and Web of Science (search period 1974-2015). Level of evidence (levels I and II) as developed by the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) and study effectiveness were evaluated. Seven intervention studies met the inclusion criteria. Interventions comprised the Hanen Parent Program, Responsive Education/Prelinguistic Milieu Teaching, and Enhanced Milieu Teaching. A substantial proportion of children with a DD also had a diagnosis of Down syndrome (DS). Results: Five of the seven studies reported a significant effect of intervention on parent responsiveness, child communication, and aspects of language interactions (favoring intervention groups over control groups), but no studies reported significant effects of intervention on expressive language vocabulary. Conclusions: Intervention programs aimed at facilitating the communication and language development of children with a DD appear to improve a child's general communication abilities but have limited impact on expressive language development. [ABSTRACT FROM AUTHOR]