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People with intellectual disabilities face health disparities, including in high‐income countries such as the United Kingdom, despite publicly funded healthcare. This paper describes the healthcare system in England (a nation of the United Kingdom) for the general population, and more specifically for people with intellectual disabilities. Key legislation that impacts the lives of people with intellectual disabilities, such as the UK Equality Act 2010 (https://www.legislation.gov.uk/ukpga/2010/15/contents), the Mental Capacity Act 2005 (https://www.legislation.gov.uk/ukpga/2005/9/contents), and the UN Convention on the Rights of Persons with Disabilities, and its implementation in the United Kingdom, is discussed. The role of deinstitutionalization and the shift to living in the community for people with intellectual disabilities is also discussed. Programmes that have been implemented to address the health disparities experienced by people with intellectual disabilities are reviewed. Finally, the recent changes to healthcare organization in the UK, the COVID‐19 pandemic, and the implementation of the Valuing People white paper are discussed. [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]

Zambia is a low‐income country on the African continent which is facing a high rate of health inequalities. Although the government has made efforts to reform the organization of healthcare to reduce inequalities, the practical implementation of disability policies remains challenging. Specifically, people with intellectual disabilities (ID) face barriers to accessing healthcare services in Zambia, due to geographic or socioeconomic factors, stigma, and limited specialized health professionals. This perspective paper provides an overview of the current policy and organization on the healthcare provision for people with ID. It presents the key challenges people with ID face in Zambia to access quality healthcare services. Additionally, we provide examples of good practices with a community approach. We discuss policy implementation of disability rights, including access to healthcare, the impact of raising knowledge and awareness about people with ID, and how gathering contextual information through research can help to reduce inequalities. Community and culturally sensitive approaches to improve access to healthcare for people with ID in Zambia are crucial. We call for close collaboration between the fields of research and practice to combine expertise and strengthen the impact and possibilities of scaling good practices within Zambia. [ABSTRACT FROM AUTHOR]

Disability support systems have not consistently used family‐centered practices when supporting families of children with disability. Families have experienced structural and interpersonal barriers that have negatively impacted not only their child's quality of life, but also family quality of life (FQOL). The eight domains of QOL as defined by the International Association for the Scientific Study of Intellectual Disabilities [IASSID] are reflected in a family‐centered model of support developed for children and young people by Microboards Australia. The Microboards for Children [MB4C] model reflects best family centered practice based on principles that integrate well with recognised FQOL domains such as family relationships, support from other people and from disability‐related services, and leisure and enjoyment of life. The MB4C model aims to enhance families' knowledge, skills, confidence, and sense of wellbeing to support them develop a vision for an active, socially connected, and happy future with their child. The model consists of a structured network of formal and informal support to enhance not only their child or young person's personal relationships, social networks, and community inclusion but also to enable parents and siblings to access education, employment and to enjoy life in their community – all indicators of FQOL. In this paper we explore how these features of MB4C policies and practice align with family‐centered practice principles and with FQOL domains. We argue that the MB4C model provides an example of how FQOL may be enhanced by a holistic family‐centered disability service system that works in partnership with families with disability. [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 presents current information on policy developments, service design, best practices, and approaches to empower the users of health and medical care services for people with intellectual disabilities in Poland. Polish regulations allow systemic support to be provided for all people with disabilities. However, Polish patients with intellectual disabilitiy (PwID) and their caregivers face many barriers. Although a key obstacle is the lack of a standard definition that approaches disability in an interdisciplinary way, PwID are also more likely to experience difficulties in personal communication in medical settings and less likely to encounter specialists prepared to work with this group. There is also a need to pay greater attention to the expectations of PwID. To facilitate a holistic approach to diagnosis and therapy, there needs to be coordination between different specialists, including medical staff, paramedics, psychologists, and teachers. Providing personal communication training for medical personnel, as well as developing dedicated procedures for PwID in primary health care, clinics and hospitals, will improve equal access to health and health literacy for all in Poland. Even so, it is important to respect the autonomy of PwID and the commitment of caregivers. [ABSTRACT FROM AUTHOR]

This paper 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]

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]

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.

Trauma informed care has become an evidenced based approach for inpatient and residential services for people in the general population who are likely to have been impacted by trauma. Given the increased vulnerability to psychological trauma for adults with an intellectual disability, it should follow that residential services for adults with an intellectual disability would also benefit from a trauma informed care approach. Two focus groups and individual interviews with seven adults with an intellectual disability and six workshops with seven service providers were conducted to co‐produce a trauma informed care framework for residential services that was evidence‐based and guided by established models (MRC, Developing and evaluating complex interventions, London: MRC & NIHR, 2019; Wight et al., Journal of Epidemiology and Community Health, 70, 520–525, 2016). The framework was developed into four chapters: 'Setting the context'; 'Organisational change'; 'Workforce development'; and 'Trauma focussed services'. A logic model outlining the mechanisms of change was refined over the course of the co‐production workshops. This is the first study to develop and co‐produce a trauma informed care framework for residential and supported living accommodation for adults with an intellectual disability. The framework has implications for local policy and practice in its current cultural context. Future development is required to operationalise and test the framework and to explore its adaptability to international contexts. [ABSTRACT FROM AUTHOR]

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

Background: 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]