Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"Synthesis: International perspectives on healthcare for people with intellectual and developmental disabilities","authors":"Marian E. J. Breuer,&nbsp;Tim Pelle,&nbsp;Geraline L. Leusink,&nbsp;Christine Linehan,&nbsp;Jenneken Naaldenberg","doi":"10.1111/jppi.12500","DOIUrl":"https://doi.org/10.1111/jppi.12500","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12500","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140114261","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Healthcare for people with intellectual disabilities in the Netherlands","authors":"Sylvia Huisman,&nbsp;Dederieke Festen,&nbsp;Esther Bakker-van Gijssel","doi":"10.1111/jppi.12496","DOIUrl":"https://doi.org/10.1111/jppi.12496","url":null,"abstract":"<p>In this article, we describe the healthcare system for people with intellectual disabilities (ID) in the Netherlands. The general background about healthcare for people with ID is the same worldwide: their health needs are often unrecognized and unmet. We delineate, from a historical perspective, the steps the Netherlands has taken to change the situation for them. The Netherlands crossed a milestone in 2016 when it ratified the UN Convention on the Rights of Persons with Disabilities. Despite challenges in establishing numbers, an estimated ID prevalence of 1.45% was determined. The Dutch healthcare system has different levels, is funded through six distinct laws, and is complicated. The Netherlands has a spectrum of disability care services that increasingly collaborate in shaping the care of people with ID. People with ID and their representatives are increasingly involved in the process of shaping this care. The general practitioner plays a central role in the Dutch healthcare system, serving as the gatekeeper to medical specialists. Furthermore, the Netherlands recognizes the role of a physician for people with ID as a medical specialization. The core competencies of the ID physician include knowledge of the etiology and consequences of ID and associated health problems. The ID physician also knows how to deal with diagnostic and therapeutic barriers. Key challenges facing ID healthcare in the Netherlands include difficulties supporting people with ID due to the increasing complexity of society, concerns about continuity of care at the transition age (18−/18+), inadequate reach of population screening programs for people with ID, and limited availability of (routine) data for research on the ID population. The Dutch government encourages research in the ID field to overcome these challenges by financially supporting academic collaboratives. Substantial progress has been made, but key challenges remain, showing that there is still great room for improvement.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12496","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140114262","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Healthcare for people with intellectual and developmental disabilities in Italy","authors":"Alice Bacherini,&nbsp;Irene Pierluigi,&nbsp;Giulia Balboni","doi":"10.1111/jppi.12490","DOIUrl":"https://doi.org/10.1111/jppi.12490","url":null,"abstract":"<p>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.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12490","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140024764","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Describing healthcare systems for people with intellectual and developmental disabilities: Global chances and challenges","authors":"Tim Pelle,&nbsp;Marian E. J. Breuer,&nbsp;Jenneken Naaldenberg,&nbsp;Christine Linehan","doi":"10.1111/jppi.12499","DOIUrl":"https://doi.org/10.1111/jppi.12499","url":null,"abstract":"<p>This Special Edition was conducted under the auspices of the <i>Health Issues</i> and <i>Comparative Policy and Practice</i> Special Interest Research Groups (SIRGs) of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD). The aim of this Special Edition is to profile how the health systems in different global jurisdictions respond, if at all, to the health needs of people with intellectual and developmental disabilities. The rationale for the Special Edition is the dearth of information on health systems for people with intellectual and developmental disabilities, a noticeable omission given the substantial evidence of health inequalities experienced by this population. In 2006, Professor Gloria Krahn et al. (<span>2006</span>) coined the term “cascade of disparity” to describe these inequalities, which were evidenced at all levels of healthcare, from health promotion through to health outcomes. These inequalities occurred despite the protections of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which to date has been signed by 164 countries worldwide (United Nations, <span>2006</span>). Article 25 of UNCRPD specifically protects the right of persons with disabilities to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. Most recently, health inequalities were starkly illustrated during the COVID-19 pandemic when people with intellectual and developmental disabilities experienced higher mortality and morbidity as well as discriminatory practices in treatment access (Cuypers et al., <span>2023</span>; Jeste et al., <span>2020</span>; Koks-Leensen et al., <span>2023</span>; Maulana et al., <span>2021</span>; Rosencrans et al., <span>2021</span>; Tenenbaum et al., <span>2021</span>). These COVID-19 experiences were the impetus for this Special Edition. The country profiles presented here address a key gap in the existing knowledge of how different countries address the healthcare needs of people with intellectual and developmental disabilities and provide an opportunity to share good practices that may be adopted elsewhere.</p><p>Given that this Special Edition does not seek conventional research papers, but rather an overview of the structure of health systems, authors were guided from the outset on the type of submission required. As a first step, a pre-submission process was implemented to garner expressions of interest from prospective authors. In the case of multiple pre-submissions from one country, the editorial team facilitated collaborative development of a joint paper.</p><p>To encapsulate the pivotal elements deemed necessary by the editorial team, a distinct template was employed, contrasting the conventional structure of scientific papers. The template included the following sections: (1) Abstract; (2) Introduction to the general healthcare system within the participating country; ","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12499","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140024739","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Health systems, health policies, and health issues for people with intellectual disabilities in England","authors":"Genevieve Breau","doi":"10.1111/jppi.12493","DOIUrl":"https://doi.org/10.1111/jppi.12493","url":null,"abstract":"<p>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.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12493","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140024617","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ireland's approach to health and social care policy and practice for people with intellectual and developmental disabilities","authors":"Aoife Fennelly,&nbsp;Michael Tully,&nbsp;Karen Henderson,&nbsp;Éilis Rojack,&nbsp;Tracey Jones,&nbsp;Catherine Jackman","doi":"10.1111/jppi.12491","DOIUrl":"https://doi.org/10.1111/jppi.12491","url":null,"abstract":"<p>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.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140024740","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Intellectual disability healthcare in Australia: Progress, challenges, and future directions","authors":"K. S. Brooker,&nbsp;R. De Greef,&nbsp;J. N. Trollor,&nbsp;C. S. Franklin,&nbsp;J. Weise","doi":"10.1111/jppi.12497","DOIUrl":"https://doi.org/10.1111/jppi.12497","url":null,"abstract":"<p>People with intellectual disability experience some of the greatest health disparities in Australia. Individuals are expected to access mainstream health services that are ill equipped to meet their needs. The Australian government has made recent commitments to improve the healthcare of people with intellectual disability. This article describes the Australian health system and how it responds to the needs of people with intellectual disability. It draws on examples of advances in policy, inclusion, and service development, achieved through concrete and persistent systemic advocacy, to discuss emerging evidence on the delivery of healthcare to people with intellectual disability in Australia. The article also highlights immediate priorities including increasing the uptake of health assessments, building the capacity of our health workforce, and responding to the needs of people with intellectual disability in COVID-19 outbreaks or other natural disasters. Intellectual disability healthcare is at a dynamic point in Australia with commitment and funding from government to lead to change. It is critical that momentum in health services development is maintained to enable improved health outcomes for people with intellectual disability.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12497","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140024616","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A portrait of Brazilian healthcare for people with intellectual and developmental disabilities","authors":"Eder R. Silva,&nbsp;Flavia H. Santos","doi":"10.1111/jppi.12494","DOIUrl":"https://doi.org/10.1111/jppi.12494","url":null,"abstract":"<p>In Brazil, the Unified Health System (SUS) is the national health system that offers free medical services to all citizens including all levels of treatment and prevention of diseases, subsidized by the government. Although SUS is universally offered, people with intellectual and developmental disabilities (I/DD) face challenges regarding healthcare. This article aims to present a description of the healthcare framework for people with I/DD in Brazil, as well as to characterize the Care Network for Person with Disabilities. This is a descriptive study that reports aspects of the structure and functioning of the health system in the country. In addition, we summarize core data from the National Health Survey that characterizes the health condition of people with I/DD in the country. Although Brazil has promoted legislation in favor of the health of people with I/DD and other disabilities, the obstacle is the implementation. Overall, there have been advances in SUS efficacy. However, challenges include long waiting times for diagnosis, habilitation/rehabilitation, inadequate transportation, and insufficient staff training on disability and I/DD, particularly. In this sense, it is necessary to monitor laws and inclusive actions so that the principles of the SUS are actually applied.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12494","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140114178","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Healthcare access and delivery for people with intellectual and developmental disability in the United States: Policy, payment, and practice considerations","authors":"Alexandra (Alixe) Bonardi,&nbsp;Susan L. Abend,&nbsp;Ari Ne'eman","doi":"10.1111/jppi.12487","DOIUrl":"https://doi.org/10.1111/jppi.12487","url":null,"abstract":"<p>Over 7.5 million people (approximately 2% of the US population) with intellectual and developmental disability live in the United States with the vast majority living in the community and accessing healthcare from the general healthcare system. For over two decades, there has been a national recognition that people with IDD experience poorer health outcomes and experience barriers in access to healthcare. We describe the important legal and financial frameworks that influence access to health care for people with IDD in the US, including a summary of major federal laws and insurance programs that have shaped the landscape of health and social care in the community, evolving trends in payment models, and the risks and benefits of these models. Further, we provide a description of health care delivery models which have been developed to support healthcare for people with disabilities including coordinated care delivery models. Clinical training and support for non-clinicians to attend to the particular health care needs of the population with IDD is critical yet is not widely available. Additionally, there remain significant access and quality gaps in healthcare for people with IDD. We conclude with a call for advances in health care quality, access and efforts to advance research and data collection to promote health equity for this population.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140114359","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Neighbourhood deprivation and access to early intervention and support for families of children with intellectual and developmental disabilities","authors":"Sophie Laxton,&nbsp;Caitlin Moriarty,&nbsp;Suzi J. Sapiets,&nbsp;Richard P. Hastings,&nbsp;Vasiliki Totsika","doi":"10.1111/jppi.12486","DOIUrl":"https://doi.org/10.1111/jppi.12486","url":null,"abstract":"<p>Ensuring families of children with intellectual and/or developmental disabilities (e.g., developmental delay, intellectual disability, autism) can access early intervention and support is important. Current research indicates there are family-level socioeconomic disparities of access to early intervention and support, however, there is limited evidence on the relationship between neighbourhood-level socioeconomic deprivation and access to support. Therefore, the aim of this study was to examine the relationship between neighbourhood deprivation and families' access to and unmet need for early intervention and support. We collected cross-sectional data using a survey of 673 parental caregivers of young children with suspected or diagnosed intellectual and/or developmental disabilities in the UK. Multiple regression models were fitted for three early intervention and support outcome variables: access to early intervention; access to services across education, health, social care, and other sectors; and unmet need for services. Each regression model included a neighbourhood deprivation variable based on the index of multiple deprivation and five control variables: family-level economic deprivation, country, caregivers' educational level, developmental disability diagnosis, and informal support sources. Neighbourhood deprivation was a significant independent predictor of access to services, but neighbourhood deprivation was not a significant predictor of access to early intervention or unmet need for services. Families living in the most deprived neighbourhoods accessed fewer services than other families. Socioeconomic disparities of access to early intervention and support, at both a neighbourhood and family level, exist for families of young children with suspected or diagnosed intellectual and/or developmental disabilities in the UK. Future research should focus on policy and other interventions aimed at addressing socioeconomic disparities at the neighbourhood and family level, to ensure equitable access to early intervention and support.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12486","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140114173","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}