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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]

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]

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.

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]

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]