Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"More of the Same: A Document Analysis of the Government's Response to Ageing with Intellectual Disabilities in Hong Kong","authors":"Kangwei Xun,&nbsp;Christine Bigby,&nbsp;Tal Araten-Bergman","doi":"10.1111/jppi.70072","DOIUrl":"https://doi.org/10.1111/jppi.70072","url":null,"abstract":"<p>As the population of people ageing with intellectual disabilities grew in the 1980s, the Hong Kong government supported research exploring their needs and recommended a range of initiatives, including the promotion of community inclusion. This study aimed to identify how the government has understood and responded to the ‘problem’ of people ageing with intellectual disabilities since that time. A total of 53 documents published by the Hong Kong government between 2004 and 2024 related to ageing with intellectual disabilities, including reports, funding agreements, financial budgets, and policy recommendations, were identified. They were thematically analysed to identify how ageing with intellectual disabilities was represented as a problem and how the government responded to the problem. The findings show that people ageing with intellectual disabilities are portrayed as declining physically and ageing prematurely, their needs as no longer being met by vocational adult services, and their families as having limited capacity to meet their increasing care needs. With a few exceptions, government policies have not pursued specialist programs targeting ageing people or their families. Rather, policies have enhanced the capacity of general services for adults with intellectual disabilities to address health care needs, the capacity of parental caregivers through education and allowances, and have alleviated parental anxiety about future care through the establishment of Special Needs Trust. While recognising the changing needs of the growing number of people ageing with intellectual disabilities, the Hong Kong government has nonetheless continued the policy trajectory established in the 1980s that emphasises lifelong care and protection of people with intellectual disabilities rather than promoting community inclusion and independent living.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-08-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70072","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148784213","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":"Correction to “Chronicity of Challenging Behaviors in Persons With Severe/Profound Intellectual Disabilities Who Received Active Treatment During a 20-Year Period”","authors":"","doi":"10.1111/jppi.70071","DOIUrl":"https://doi.org/10.1111/jppi.70071","url":null,"abstract":"<p>\u0000 <span>Thompson, T. J.</span>, <span>M. W. Walker</span>, <span>J. B. LeBoeuf</span>, <span>R. J. Simeonsson</span>, and <span>E. Karakul</span>. <span>2022</span>. “ <span>Chronicity of Challenging Behaviors in Persons With Severe/Profound Intellectual Disabilities Who Received Active Treatment During a 20-Year Period</span>.” <i>Journal of Policy and Practice in Intellectual Disabilities</i> <span>19</span>, no. <span>2</span>: <span>162</span>–<span>170</span>. https://doi.org/10.1111/jppi.12395.\u0000 </p><p>In the author byline, the surname of the author Karacul, E. was incorrectly published as “Karakul.” The correct spelling should be “Karacul.”</p><p>We apologize for this error.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70071","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148615499","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":"Appropriate Care and Support for People With Down Syndrome in the Netherlands","authors":"Francine A. van den Driessen Mareeuw,&nbsp;Antonia M. W. Coppus,&nbsp;Diana M. J. Delnoij,&nbsp;Esther de Vries","doi":"10.1111/jppi.70069","DOIUrl":"https://doi.org/10.1111/jppi.70069","url":null,"abstract":"<p>The (often complex) needs experienced by people with Down syndrome are not always sufficiently answered by available care and support. This paper aims to provide insight into what appropriate care and support for people with Down syndrome in the Netherlands entails and how it could be optimised. It is the concluding paper of a larger project, which comprised a literature review, a qualitative exploration involving (caregivers of) people with Down syndrome, and a Delphi-study among professionals and patient organisations. Thematic analysis, allowing for comparison and interpretation, was used to integrate the data from these studies. Four key topics relevant for care and support for people with Down syndrome were identified: Complexity of care and support requiring coordination; finding care and expertise; Holistic, person-centred approach; communication (between professional and person with Down syndrome). The main conclusion of the paper is that care and support for people with Down syndrome would benefit from a model that integrates services around the specific needs of this group and in which expertise is easily found and referred to. Such a network-like model offers directions to policy makers, health insurers, other professionals and all other stakeholders, to jointly bring the care and support system for people with Down syndrome to a higher level.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70069","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148467505","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":"Assessing Self-Determination: International Efforts to Translate the Self-Determination Inventory","authors":"Karrie A. Shogren,&nbsp;Mayumi Hagiwara,&nbsp;Abdulaziz H. Alsaeed,&nbsp;Yves Lachapelle,&nbsp;Vassilis Argyropoulos,&nbsp;Anna Theodori,&nbsp;Sara Santilli,&nbsp;Yunfeng Wang,&nbsp;Clarissa Moreira,&nbsp;Sofia Santos,&nbsp;André Oliveira,&nbsp;Armanda Pereira,&nbsp;Pedro Rosário,&nbsp;Clara Andrés-Gárriz,&nbsp;Cristina Mumbardó-Adam","doi":"10.1111/jppi.70070","DOIUrl":"https://doi.org/10.1111/jppi.70070","url":null,"abstract":"<p>Promoting self-determination has become an area of focus across the globe because of advocacy, policy, and research highlighting its role in improving the quality of life of people with disabilities. There have also been advancements in theories and research focused on how self-determination is defined and supported across cultures. In this article, we explore information shared by a group of international translation teams working to translate an assessment of self-determination, the Self-Determination Inventory (SDI), and the theory that underlies the assessment, Casual Agency Theory, from American English. Findings suggest universal and context-specific issues that impact translation and variation in the familiarity and contextual fit of self-determination and Casual Agency Theory constructs across cultures. Implications for research focused on developing and translating new theories and constructs across cultures to promote cross-cultural validity are discussed.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70070","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148467425","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":"The Accessibility of Government Information for People With Intellectual and Developmental Disabilities: Findings From a National Survey","authors":"Yousef Safar,&nbsp;Tiziana Volpe,&nbsp;Sabrina Campanella,&nbsp;Rachel Mills,&nbsp;Donna Brown,&nbsp;Michael McLellan,&nbsp;Monica Schroeder,&nbsp;Yona Lunsky","doi":"10.1111/jppi.70068","DOIUrl":"https://doi.org/10.1111/jppi.70068","url":null,"abstract":"<p>Information plays an important role in people's daily lives, and government information is especially critical as it encompasses a wide range of services and topics. People with intellectual and developmental disabilities (IDD) can encounter challenges when finding and understanding information, resulting in barriers to accessing and using vital information and services. This study explores how adults with IDD, their family and friends, and support staff find and understand information, specifically information shared by the Canadian government. An anonymous, cross-sectional survey was co-developed with members of local and national IDD advisory groups, including people with IDD, and distributed across Canada between March and July 2022. The survey was available in digital and print versions, with the option to receive support for completion. In total, 399 respondents participated: 219 people with IDD, 110 family/friends, and 70 support staff. The majority of participants accessed government information using the Internet, with common search topics related to finances, photo identification, and health. Respondents generally preferred having both print and digital formats available. Findings also emphasized the significant and varied roles of information liaisons, such as family and staff, in assisting people with IDD in finding and understanding information. Effective strategies and formats included reviewing information multiple times and at a slow pace, having someone explain it, and using pictures. To meet the accessibility needs of people with IDD, government agencies in Canada and internationally should provide information in multiple formats and through various sources. Additionally, when developing communications, it is essential to consult not only with families and staff but also with people with IDD themselves, as their insights are crucial in creating effective, accessible information (see Easy Read Summary at the end of this article).</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70068","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148395149","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":"Navigating Challenges and Refining Methods for Randomized Controlled Trials Including Young People With Intellectual Disabilities: Empirical and Literature-Informed Insights","authors":"Kristin Alfredsson Ågren,&nbsp;Pontus Henriksson,&nbsp;Stefan Johansson,&nbsp;Mårten J. Tyrberg,&nbsp;Jens Ineland,&nbsp;Darren Chadwick,&nbsp;Ulrika Müssener","doi":"10.1111/jppi.70066","DOIUrl":"https://doi.org/10.1111/jppi.70066","url":null,"abstract":"<p>People with intellectual disabilities experience poorer health than the general population, largely due to preventable non-communicable diseases. Although randomized controlled trials (RCTs) are the gold standard for evaluating health promotion interventions, they are rarely conducted with young people with intellectual disabilities because of inadequate research procedures. This methodological paper draws empirical insights from a research program and relevant literature involving co-design and an upcoming RCT of a digital health promotion intervention. Using the core RCT components, randomization, control, and trial procedures as an analytical framework, the paper integrates empirical experience and literature to examine challenges in conducting inclusive RCTs. Participation and accessibility emerged as overarching methodological considerations influencing recruitment, retention, engagement, statistical power, generalizability, and overall trial validity. Empirical experiences illustrated how relational, organizational, and methodological adaptations can address these challenges in practice. By combining evidence from the literature with empirically grounded strategies developed across the research program, this paper advances more inclusive and feasible RCT methodology for research involving young people with intellectual disabilities.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70066","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148324598","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":"Navigating Challenges and Refining Methods for Randomized Controlled Trials Including Young People With Intellectual Disabilities: Empirical and Literature-Informed Insights","authors":"Kristin Alfredsson Ågren,&nbsp;Pontus Henriksson,&nbsp;Stefan Johansson,&nbsp;Mårten J. Tyrberg,&nbsp;Jens Ineland,&nbsp;Darren Chadwick,&nbsp;Ulrika Müssener","doi":"10.1111/jppi.70066","DOIUrl":"https://doi.org/10.1111/jppi.70066","url":null,"abstract":"<p>People with intellectual disabilities experience poorer health than the general population, largely due to preventable non-communicable diseases. Although randomized controlled trials (RCTs) are the gold standard for evaluating health promotion interventions, they are rarely conducted with young people with intellectual disabilities because of inadequate research procedures. This methodological paper draws empirical insights from a research program and relevant literature involving co-design and an upcoming RCT of a digital health promotion intervention. Using the core RCT components, randomization, control, and trial procedures as an analytical framework, the paper integrates empirical experience and literature to examine challenges in conducting inclusive RCTs. Participation and accessibility emerged as overarching methodological considerations influencing recruitment, retention, engagement, statistical power, generalizability, and overall trial validity. Empirical experiences illustrated how relational, organizational, and methodological adaptations can address these challenges in practice. By combining evidence from the literature with empirically grounded strategies developed across the research program, this paper advances more inclusive and feasible RCT methodology for research involving young people with intellectual disabilities.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70066","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148324597","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":"Pain Assessment in Adults and Children With Complex Disabilities and Unexplained Behavioral Changes: An Observational Study","authors":"Ciccone Ornella,&nbsp;Lepri Alessandro,&nbsp;Zaffini Olga,&nbsp;Camanni Guido,&nbsp;Brunozzi Giulia,&nbsp;Vallasciani Massimo,&nbsp;Baglioni Antonella,&nbsp;Tinarelli Chiara,&nbsp;Jenkner Alessandro,&nbsp;Salata Michele,&nbsp;Elisei Sandro","doi":"10.1111/jppi.70067","DOIUrl":"https://doi.org/10.1111/jppi.70067","url":null,"abstract":"<p>Pain assessment of people with intellectual disabilities (PWID) represents a complex clinical task that often results in underestimation and inadequate treatment. The Serafico Institute has undertaken research in children and young adults with intellectual disabilities (ID) associated with multiple sensory, physical, and psychobehavioral impairments to improve the ability to detect pain in this vulnerable population. Participants unable to pain self-report, presenting with unexplained behavioral changes, were assessed with the revised Face, Legs, Activity, Cry, Consolability (R-FLACC) scale by trained educational and health staff from February to July 2023. Data was compared to retrospective information collected from February to July 2022, before the training of educational and health personnel had been undertaken. Five hundred fifty events of unexplained behavioral changes were evaluated in 87 participants with ID. Among those, 202 were assessed as pain-related events, 345 were judged as distress events and three events were not clearly identified. The cause of pain was identified in 55% of events. Compared to the retrospective data, we could observe an increase in the detection of pain-related episodes and a reduction in events that, while not clearly rated, were still treated with analgesics or analgesics plus sedatives. The results of the study highlight that formal training of educational and health personnel, along with the use of a validated tool for pain assessment in PWID can lead to identifying pain-related events that might otherwise have been overlooked. The fact that the R-FLACC was found to be very useful for signaling a state of “discomfort,” while not being discriminatory regarding its nature and the cause of pain in this complex population, calls for new studies to identify a tool capable of more accurately discriminating the cause of the pain.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-06-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70067","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148324441","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":"Pain Assessment in Adults and Children With Complex Disabilities and Unexplained Behavioral Changes: An Observational Study","authors":"Ciccone Ornella,&nbsp;Lepri Alessandro,&nbsp;Zaffini Olga,&nbsp;Camanni Guido,&nbsp;Brunozzi Giulia,&nbsp;Vallasciani Massimo,&nbsp;Baglioni Antonella,&nbsp;Tinarelli Chiara,&nbsp;Jenkner Alessandro,&nbsp;Salata Michele,&nbsp;Elisei Sandro","doi":"10.1111/jppi.70067","DOIUrl":"https://doi.org/10.1111/jppi.70067","url":null,"abstract":"<p>Pain assessment of people with intellectual disabilities (PWID) represents a complex clinical task that often results in underestimation and inadequate treatment. The Serafico Institute has undertaken research in children and young adults with intellectual disabilities (ID) associated with multiple sensory, physical, and psychobehavioral impairments to improve the ability to detect pain in this vulnerable population. Participants unable to pain self-report, presenting with unexplained behavioral changes, were assessed with the revised Face, Legs, Activity, Cry, Consolability (R-FLACC) scale by trained educational and health staff from February to July 2023. Data was compared to retrospective information collected from February to July 2022, before the training of educational and health personnel had been undertaken. Five hundred fifty events of unexplained behavioral changes were evaluated in 87 participants with ID. Among those, 202 were assessed as pain-related events, 345 were judged as distress events and three events were not clearly identified. The cause of pain was identified in 55% of events. Compared to the retrospective data, we could observe an increase in the detection of pain-related episodes and a reduction in events that, while not clearly rated, were still treated with analgesics or analgesics plus sedatives. The results of the study highlight that formal training of educational and health personnel, along with the use of a validated tool for pain assessment in PWID can lead to identifying pain-related events that might otherwise have been overlooked. The fact that the R-FLACC was found to be very useful for signaling a state of “discomfort,” while not being discriminatory regarding its nature and the cause of pain in this complex population, calls for new studies to identify a tool capable of more accurately discriminating the cause of the pain.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-06-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70067","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148324442","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":"Economic Situation of Adults With Intellectual Disability Living in the Community: Evidence From the United Kingdom","authors":"Filip Sosenko","doi":"10.1111/jppi.70064","DOIUrl":"https://doi.org/10.1111/jppi.70064","url":null,"abstract":"<p>This study investigates the economic situation of adults with intellectual disabilities (ID) living in the community in the United Kingdom, utilizing data from the Family Resources Survey. The analysis covers 8 years of data (2012/13–2019/20) to provide a comprehensive overview of income, material hardship, and employment status among this population. Adults with ID are shown to experience heightened levels of poverty and material hardship compared to the general population and other groups with disabilities. The findings reveal that nearly a third of households with an adult with ID live below the official poverty line, and many struggle with essential needs, such as heating and food security. The study highlights the unique challenges faced by adults with ID, including low levels of paid employment and high costs associated with their condition, which are not adequately covered by disability benefits. The findings underscore the need for policy interventions to address the economic and social vulnerabilities of adults with ID. Suggestions include increasing the Personal Independence Payment for those with ID and considering economic support through a household-based lens to accommodate the needs of family members involved in caregiving.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70064","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148282127","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}