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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]

People with intellectual disabilities are largely absent from the labor market. Instead many people with intellectual disabilities attend one or more of the various employment, day, work (occupational) and training services available. This paper considers the impact of adult day service reform along with the new comprehensive employment strategy (CES) might have in improving the participation of people with intellectual disabilities in the open labor market. Day and employment services for people with intellectual disabilities in Ireland are largely organized though the Health Service Executive (HSE), the medical arm of Ireland's service machinery. However, these services have kept Irelands "invisible citizens" segregated, and separate from their communities. Despite identifying this problematic issue, services intended to support people with intellectual disabilities to lead more meaningful and fulfilled lives and be included in their communities have been unsuccessful in achieving this. Although successive governments and have announced to phase out segregated service provision for people with intellectual disabilities so that they can lead integrated lives as part of their communities, trends in the data reveal a growth rather than a decline in specialist, segregated service attendance. The widespread closures of employment services that operated as sheltered workshops, for example, did not lead to an automatic increase in the employment rates as would perhaps be expected. This signals that, despite the promise of better community inclusion through revived policies, as part of the mainstreaming agenda, services still largely operate in separate spheres and people with disabilities continue to lead marginalized lives on the peripheries of society. This research concludes that current disability policies in place to improve the lives of persons with disabilities and increase their participation and inclusion have had limited success. Most people with intellectual disabilities continue to attend adult days services rather than participating in their communities or engaging in meaningful work. [ABSTRACT FROM AUTHOR]

Individuals with mild intellectual disabilities (MID) or borderline intellectual functioning (BIF) and mental health problems or challenging behavior are difficult to reach by mainstream healthcare facilities and support organizations and frequently avoid the care they need. To improve the care for this client group in the Netherlands, the (Flexible) Assertive Community Treatment (ACT) model—originally developed for people with severe mental illness—was adapted and implemented by five organizations specialized in the care for people with MID/BIF and mental health problems or challenging behavior. After an introduction of the original ACT model and a description of the international state of the art of ACT for people with (M)ID/BIF, this paper describes the (Flexible) ACT‐MID/BIF model as developed and implemented in the Netherlands. Professionals' and clients' experiences with this new type of care are reported as well. Implications for clinical practice, policy and research are discussed. [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]

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]

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]

The authors analyzed references to 'friendship' in the documents that set out the policy vision for adults with intellectual disabilities living in England. Friendship is commonly identified as one of the human 'goods'-those aspects of life that contribute to our flourishing. Disability ethicists have suggested that friendship is especially important for people with the most profound intellectual and multiple disabilities, as a means of establishing their social and moral standing. However, the idea of friendship with adults with profound disabilities is problematic if friendship is defined as it is commonly understood in the contemporary English context. Citizenship and rights have dominated policy discourse since the publication of the English intellectual disabilities strategy, Valuing People, in 2001. However, recent policy documents give greater prominence to friendship and frame it explicitly as a 'good' in the lives of adults with profound disabilities. The language used in these policy documents signals but does not openly acknowledge the tensions and complexities entailed in the idea of friendship with adults with profound disabilities. The authors suggest that the failure to address these tensions and complexities is a recipe for failure in the implementation of policy recommendations. They note the need for policy in this area to be reconsidered and suggest that this process should be informed by both empirical research and conceptual analysis. [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]

Background: Creating equitable access to mainstream health and healthcare service has been promoted as a means of addressing the health disparities experienced by people with intellectual disabilities (ID) globally. Specific Aims: This study addressed two questions: What strategic actions are most likely to bring about inclusive primary, secondary, and tertiary health systems for people ID? What are the system indicators that can be used to evidence a reduction in health disparities for this population? Method: A four‐phase study was undertaken involving an international expert advisory group, literature reviews, and individual interviews with 16 key informants from Special Olympics (SO). These led to an online international survey in which 61 respondents rated the relevance and feasibility of 30 strategic actions and system indicators to promote inclusive systems and reduce health disparities. Findings All the strategic actions and system indicators were endorsed as relevant but less so for the feasibility of implementing them. Top‐rated strategic actions included the availability of policy statements and practice guidelines on making reasonable adjustments, mandatory training of health professionals on ID, and their involvement as cotrainers in staff training. Discussion Implementing these strategic actions and system indicators will be a major undertaking and one that is unlikely to be speedily achieved given the many different policy and health systems that exist even within a locality as well as nationally and internationally. Nonetheless, the identified actions and indicators from this study can form the basis for improved access to health and for advancing the human rights of persons with ID. [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]

Quality of life is a concept that has had robust development and application in the field of intellectual disability in recent decades. It functions as an apt goal for individuals to enhance their lives, as well as for policy and disability support. Quality of life helps address ethical issues by acting as a key guidepost in ethical considerations. Current philosophical and human rights approaches to disability support the view that intellectual disability is no reason to assume poor quality of life. Moreover, individuals with intellectual disabilities themselves typically rate their own quality of life quite high. Similarly, families perceive disability as contributing to family quality of life in some ways, although this is tempered by social constructs, especially normalcy, that support marginalization and discrimination. Disability Studies, and critical disability theory that constitutes much of its foundation, offer an alternative perspective of intellectual disability that values its contribution to larger society‐intellectual disability as a positive and necessary aspect of the diversity within the human mosaic. It is argued that this perspective of intellectual disability negates the necessity of new eugenics practices. [ABSTRACT FROM AUTHOR]

Internationally, changes are advocated in the support available to persons with intellectual disability. Socially inclusive personalized arrangements are intended to replace congregated and segregated day services. The study examines the changes in the provision of day services within Ireland over a 5‐year period when new policies were being promoted but at time of economic stringencies. Secondary analysis was carried out on data extracted from the National Intellectual Disability Database on all persons aged 18 years and above in 2009 and 2014 who received day services, which were grouped into four main types: care centers, sheltered workshops, employment schemes, and vocational training. Participants in each type of service were profiled by age, level of disability, and living arrangements. Variations in the provision of these services across nine regions were also examined. In 2009, 59% of persons attended care centers, but the proportion had increased in 2014 to 69%. There were reductions in the numbers attending sheltered workshops (down from 23 to 16%) and those receiving employment supports (down from 13 to 11%). By 2014, variations in the numbers attending care centers were evident across the country. The increase in care provision does not accord with national or international policies. Rather, it may reflect ineffective policy implementation strategies and financial cutbacks which services experienced during this period. This study illustrates the value of a national dataset for monitoring policy implementation. [ABSTRACT FROM AUTHOR]

Abstract: People with intellectual disability in Australia experience poor mental health, are underrepresented in mental health policy, and encounter major barriers in accessing mental health services and treatments. This study interrogated the current representation of people with intellectual disability and recommended strategies to enhance the inclusion of intellectual disability in mental health policy. A policy analysis framework was developed that included context, stakeholders, process, and content. Nine pieces of Australian mental health legislation and 37 mental health policy documents were analyzed using the framework. Fifteen of the 37 documents included mention of intellectual disability with limited attention to the specific mental health needs of people with intellectual disability and mental illness. Only two documents identified specific strategies or measurable actions and targets to improve the access of people with intellectual disability and mental illness to mental health services. The documents’ strengths that may be applied to develop inclusive intellectual disability mental health policy included being values‐based, recognizing diversity, taking a life‐course approach, focusing on workforce development, and ensuring checks and balances. An inclusive approach to the development and implementation of intellectual disability mental health policy will best meet the mental health needs of individuals with intellectual disability. An inclusive policy approach will be based on a sound evidence‐base and include a comprehensive understanding of the context in which the policy is developed; consultation with key stakeholders including people with intellectual disability and mental illness, their family and carers, and those who work with them; cross‐sector collaboration and workforce training. An inclusive approach to the development and implementation of intellectual disability mental health policy using an integrated knowledge translation approach will address the current lack of attention to the important area of how to best meet the mental health needs of individuals with intellectual disability. [ABSTRACT FROM AUTHOR]

The authors explored the interface between bilingualism and the education of students with intellectual disability ( ID) through a review of the English language literature. Little substantive research endeavor was found connecting the two areas. We interpreted the term 'bilingual' as including both children from bilingual homes (simultaneous bilinguals) and children being educated through a language other than the language of their home (sequential or late bilinguals). Six main themes were identified in the literature: (1) assessment, (2) staff preparation and training, (3) academic progress and supporting bilingual students with ID, (4) advice to families on bilingual upbringing and education, (5) communication development, and (6) policy. Considerable progress in assessing bilingual students for ID has been made in the last decade, and good practice guidelines have been developed; however, there is still a paucity of appropriate assessment tools. Disproportionality remains a problem, but research shows that it is a more complex problem than simply overcoming the problem of differentiating between language difficulties and ID. There is strong evidence that children who are in the process of becoming bilingual make better progress when initially supported through their L1; this is likely to be equally applicable to students with ID. Professionals continue to advise parents against bilingualism for children with ID, although there is little evidence either for or against bilingualism for students with ID. Research should concentrate on how bilingual children with ID can be supported to develop skills in both their languages, and on ensuring that children with ID who are becoming bilingual are supported academically. [ABSTRACT FROM AUTHOR]

The increasing longevity of adults with intellectual and developmental disabilities ( I/ DD) has raised new issues for families. Individuals with I/ DD who face difficulties in achieving full independence might remain dependent on family members such as aging parents, who may be unable to provide continued support. Therefore, reliance on siblings for the future care can be an adaptive action for many families. Sibling caregiving is a universal phenomenon and requires rigorous examination and exploration. Like other carers, siblings require support and services to fulfill their role's expectations. Nonetheless, the degree and kind of support and services needed by them remains undetermined owing to the lack of research. The author reviewed variables that can enhance and complicate sibling caregiving of individuals with I/ DD through the application of the Push- Pull model. The Push- Pull model can help in understanding that the role and interaction of multiple influences can have methodological and pedagogical implications for sibling caregiving research, support programs, social law, and policy change. The author notes that the review can provide a foundation for future studies, and she recommends inclusion of siblings in family policies. [ABSTRACT FROM AUTHOR]

The need for quality of life, both as a concept and as a measure, to be applied to policy and practice has been noted in the disability literature for several years. In 2012, Schalock and Verdugo introduced a conceptual model to help service organizations evaluate if congruence exists among their systems, policies, and practices and, if misalignments exist, to make changes through policy and systems change. Their model focuses on two levels, system-level processes and organization-level practices, at three consecutive stages of use: inputs, throughputs, and outputs. In this article, the authors extend the work of Schalock and Verdugo by adding a third level of application, individual- and family-level living, and propose the inclusion of outcomes as a fourth stage of use representing a consequence of outputs. We recognize the dynamic interaction among all components of the conceptual framework and, like Schalock and Verdugo, argue for alignment both vertically (system, organization, and individual and family living levels) and horizontally (inputs, throughputs, outputs, and outcomes) within our revised conceptual framework. Based on this, the authors propose that quality of life outcomes (the ongoing effects of outputs) should be an ultimate focus of service organizations and policy development if quality of life is to be enhanced for individuals with intellectual and developmental disabilities and their families. [ABSTRACT FROM AUTHOR]

The W orld R eport on D isability identifies employment as an important element of social participation. The Report also points to the need for research that crosses national boundaries to identify and address central areas of concern. However, such efforts are hampered with respect to intellectual disability ( ID) by inconsistencies in the population definitions used, the definition of employment or employability, and metrics of employment participation. The authors explore the varied ways in which employment participation rates for people with ID are determined and reported in jurisdictions around the world, and note that with respect to employment metrics, there remains substantial variation in the methods used in data collection and reporting across agencies and countries. They also note that close inspection of methodologies is required in order to interpret data from any official statistical agency (as even when methods and definitions are explicit, the variations in approaches make comparisons difficult). Recommendations for harmonizing disparate definitions and metrics include a systematic analysis of the terminology and methods used in national surveys that would assist in identifying which data are comparable, agreement on a protocol and process for examining employment outcomes in the ID population, and the creation of an international panel on employment and ID charged to identify common terminology and population parameters to be specified in sample selection and description in localized research and studies. [ABSTRACT FROM AUTHOR]

Implementation of the United Nations' ( UN) Convention on the Rights of Persons with Disabilities ( CRPD), together with the new UN commitment to ensure the inclusion of people with disabilities in the post-2015 Sustainable Development Goals ( SDGs), should now be considered an overarching priority by organizations and individuals committed to improving the quality of life of people with disabilities. The CRPD is not merely the latest in a long line of UN declarations, but a potential catalyst for a radical reappraisal of policy and practice among governments and organizations of persons with disabilities (disabled persons organizations ( DPOs)) and by service planners and providers, members of professional and voluntary organizations, the research community, and by society at large. The 152 governments that have ratified the CRPD have entered into a commitment in international law to submit detailed reports to the CRPD Committee of the UN human rights commission. Although some DPOs have made good use of their right of access to this Committee, there is cause of concern about resources available to others. The Committee's criticisms of the nature and quality of government implementation highlight the need for sustained and informed advocacy by civil society and the use of the Internet and social media to raise public awareness about the potential of the CRPD to benefit people with disabilities. The author posits that lack of data on persons with disabilities in many countries now presents the most serious obstacle to accountability and monitoring. It is suggested that scientific and professional bodies need to work more earnestly in partnership with DPOs in a combined effort to make a reality of the Convention and the emerging SDGs in a new dynamic of 'research to practice.' [ABSTRACT FROM AUTHOR]

The use of restraint measures in the care of people with an intellectual disability ( ID) and challenging behavior ( CB) is recognized as problematic around the world and attempts have been made to reduce reliance upon this coercive approach. In Norway, legislation was enacted to restrict the use of restraint but paradoxically since it was implemented in 1999 there has been a very large increase in the use of one form of restraint: statutory or planned interventions. This study examined professionals' explanations for this unexpected increase. ID care staff ( n = 178) and local government supervisors ( n = 17) completed a semi-structured questionnaire (total n = 195). All participants were involved directly or indirectly in implementing restraint. Comparisons were made between the different levels of care staff and the supervisors. The care staff interpreted the increase as due to greater awareness of the regulations and restraint interventions. Supervisors had low expectations of a decrease in restraint rates in the future. It was felt that the new regulations on the use of restraints in the care of people with ID and CB had raised awareness of ethical issues and improved education on this topic. Future research should address possible strategies for sustaining these improvements and at the same time stabilizing or reducing the number of people receiving restrictive care. [ABSTRACT FROM AUTHOR]

The article explores the initial achievements in the process of implementation of the Convention on Rights of Persons with Disabilities ( CRPD) with a special focus on health of persons with intellectual disabilities ( ID) in Spain and Hungary, the first countries to submit and receive a review for their report in the European Union. The CRPD is a major human rights instrument of the United Nations that was adopted in 2006 with the goal of ensuring protection of rights of persons with disabilities by holding governments accountable for the services they provide to this population. It was found that the reports designed to represent official state comments on the situation of human rights of persons with disabilities often do not follow the reporting requirements of the Convention in terms of required data. Moreover, they do not use a unified understanding of disability promoted by the Convention and make no mention of many important health-related issues. Access to health is generally understood in a purely physical sense of availability and accessibility of services, while no attention is given to specific expectations and needs of persons with disabilities or to the competence of health staff to work with vulnerable groups. In order to be able to implement the Convention, governments need to carefully assess their country's status quo with regard to disability policies and politics, and at the same time need to develop action plans to implement the CRPD. [ABSTRACT FROM AUTHOR]

The article offers information on the report "Neurological Disorders: Public Health Challenges," which draws attention to neurological disease and other chronic disorders. The World Health Organization and the World Federation of Neurology initiated an international survey in 109 countries, covering 90% of the population of the world. The report's main aim is to inform governments and public health institutions about formulating a health policy directed at neurological disorders.