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

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]