Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"Developing Self-Advocacy Skills in Japanese Special Needs High Schools: A Survey of Teachers Educating Students With Intellectual Disabilities","authors":"Shuhei Ogawa,&nbsp;Michio Kojima","doi":"10.1111/jppi.70006","DOIUrl":"https://doi.org/10.1111/jppi.70006","url":null,"abstract":"<p>This study investigated the awareness and frequency of self-advocacy skills development training for students with intellectual disabilities conducted by teachers in Japanese special needs high school sections. The study developed the Difficulty Scale for Self-Advocacy Skills Development (DS-SSD) and the Frequency Scale for Self-Advocacy Skills Development (FS-SSD). Using these tools, the study surveyed teachers in special needs schools for students with intellectual disabilities. Teachers' responses (<i>N</i> = 80) to the DS-SSD underwent exploratory factor analysis, which revealed two primary factors: “difficulty in developing self-understanding” and “difficulty in developing communication skills for rights.” The results indicated that teachers with more years of experience, especially in special needs education, reported less difficulty developing students' self-understanding. Teachers with more years of teaching in schools found developing students' communication skills for rights less challenging. However, the study found no relationship between the frequency of self-advocacy skills development and the teachers' gender, overall teaching experience, or experience in special needs education. These findings offer insights into the challenges and frequency of self-advocacy skills instruction provided in special needs schools. Factors influencing the efficacy of these educational practices are discussed.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 1","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70006","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143530103","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":"Middle-Aged Adults' Perspectives on Caregiving for Their Siblings With Intellectual and Developmental Disabilities","authors":"Se Kwang Hwang,&nbsp;Kyung Mee Kim,&nbsp;Chung Eun Lee","doi":"10.1111/jppi.70005","DOIUrl":"https://doi.org/10.1111/jppi.70005","url":null,"abstract":"<div>\u0000 \u0000 <p>There is limited understanding of middle-aged siblings' experiences of assuming caregiving roles and responsibilities in non-Western cultures. This study explored middle-aged siblings' perceived caregiving obligation for their siblings with intellectual and developmental disabilities within the South Korean societal framework that emphasizes the cultural value of “filial piety.” Data from in-depth semi-structured interviews with 13 middle-aged siblings were thematically analyzed. The findings showed that middle-aged siblings exhibit a strong urge to fulfill their filial duties and willingly embrace the primary caregiver role. However, gender, birth order, and financial responsibilities significantly influence the fulfillment of filial obligations, with older, male, and financially secure siblings who co-reside with their siblings with disabilities being more likely to embrace caregiving roles. Despite advancements in South Korea's disability policies, the concept of caregiving as a familial duty rooted in filial piety remains unchanged. Future measures should consider individualized, culturally sensitive support for middle-aged siblings.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 1","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143475748","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":"Self-Determination and Community Inclusion: Exploring Policy Reform in Day Services for Adults With Intellectual and Developmental Disabilities in the Republic of Ireland","authors":"Nicola Maxwell","doi":"10.1111/jppi.70003","DOIUrl":"https://doi.org/10.1111/jppi.70003","url":null,"abstract":"<div>\u0000 \u0000 <p>Adult day services are central to service provision for people with intellectual and developmental disabilities (IDD) in Ireland. Policy reform, in the guise of New Directions, has sought to address the segregated and institutionalized nature of these specialist services. New Directions aims to reorient services toward providing supports to enable users to make self-directed choices and decisions and to be included in their communities, reflecting the values of the Convention on the Rights of Persons with Disabilities (CRPD). Yet, segregated day service provision is increasing and people with IDD continue to be structurally excluded from other opportunities and to have their choices circumscribed. This paper focuses on the interview narratives of staff employed in a day service in Ireland. It explores the disjuncture between, on the one hand, New Directions policy descriptions of day services as supports for self-determination and community inclusion and, on the other, the actualities of day service provision. The findings show that New Directions is understood as a means of providing individualized supports to make choices in inclusive mainstream settings but is not perceived as a clearly articulated policy. The research illustrates that the conditions and opportunities to support self-determination and community inclusion are lacking within day services and several challenges inhibit the aspirations of New Directions. The study recommends that the Irish state meets its human rights obligations to ensure that rights to self-determination and community inclusion for people with IDD are upheld. This requires critical excavation of current service provision and targeted policy resources to ensure that the fundamental rights of people with IDD are upheld.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 1","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143404426","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":"How We Might Best Develop and Deliver Training and Professional Development in Positive Behaviour Support: A Systematic Review","authors":"Julia R. Hall,&nbsp;Danielle Newton,&nbsp;Keith McVilly,&nbsp;Lisa McKay-Brown,&nbsp;Brent Hayward,&nbsp;Mirko Uljarevic","doi":"10.1111/jppi.70002","DOIUrl":"https://doi.org/10.1111/jppi.70002","url":null,"abstract":"<p>What constitutes good clinical practice in positive behavioural support (PBS) is well established. But how these clinical principles and practices are best translated into education, training and professional development remain unclear. To inform the development of a national blueprint to support education and professional development in PBS, we sought to better understand current approaches to training and education in PBS, its content and delivery. A systematic review of PBS interventions involving staff training was conducted within the timeframe of 1999–2023. Seven databases and one specialist journal (not otherwise indexed) were searched. Articles were identified using key search words; that is, ‘positive behaviour support’, ‘disability’ and ‘training’. Thirty-three articles were identified whose predominant aims were to evaluate the impact and/or efficacy of PBS-based training. Training formats included workshops, lectures, modules, classroom/group instruction and team-based learning through the review of PBS plans. Core content focused on functional behaviour analysis, behaviour support planning, behaviour support strategies and interventions, as well as skills training. Articles reflected similar core content; however, there was a lack of consistency in training delivery, methodology and subsequent outcomes. Despite this, the literature provides evidence to inform the development of a future capabilities framework and guidance on the training, education and professional development of those involved in the delivery of PBS. Subsequently, recommendations are made to inform the education, training and professional development of PBS practitioners and those responsible for the coordination and delivery of support services for people who exhibit challenging behaviour.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 1","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70002","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143362378","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":"Self-Direction in Medicaid Home- and Community-Based Services","authors":"Carli Friedman","doi":"10.1111/jppi.12531","DOIUrl":"https://doi.org/10.1111/jppi.12531","url":null,"abstract":"<p>Self-direction allows people with intellectual and developmental disabilities (IDD) to control and direct their services and supports. This study's aim was to examine how states across the United States implemented self-direction in their Medicaid Home- and Community-Based Services (HCBS) 1915(c) waiver programs for people with IDD in fiscal year (FY) 2021. We found 80% of states offered self-direction in their HCBS programs. Across the United States, the goal was to have 13% people with IDD receiving HCBS self-direct (<i>n</i> = 113 692). We found, in FY 2021, 29% of services could be self-directed and 36% of funding was projected for services eligible for self-direction. There were vast differences in how self-direction was implemented across states. For example, among the states that allowed self-direction, goals for self-direction by state ranged from 0.9% to 47.5% of people with IDD receiving HCBS. Moreover, projected spending for services eligible for self-direction varied by state from 0.1% to 100%. We believe everyone that wants to self-direct should have the opportunity to do so.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 1","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-12-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12531","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142861118","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 “What Would Have Helped People With Profound Intellectual and Multiple Disabilities in the UK During COVID-19?”","authors":"","doi":"10.1111/jppi.70001","DOIUrl":"https://doi.org/10.1111/jppi.70001","url":null,"abstract":"<p>\u0000 <span>Bradshaw, J.</span>, <span>Maguire, R.</span>, <span>Gillooly, A.</span>, <span>Hatton, C.</span>, <span>Caton, S.</span>, <span>Jahoda, A.</span>, <span>Oloidi, E.</span>, <span>Taggart, L.</span>, <span>Todd, S.</span> and <span>Hastings, R.</span>, <span>What Would Have Helped People With Profound Intellectual and Multiple Disabilities in the UK During COVID-19?</span>. <i>Journal of Policy and Practice in Intellectual Disabilities</i>, <span>2024</span>, <span>21</span>, <span>4</span>. https://doi.org/10.1111/jppi.70000\u0000 </p><p>In this Erratum, Acknowledgements has been modified to:</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70001","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142860661","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":"What Would Have Helped People With Profound Intellectual and Multiple Disabilities in the UK During COVID-19?","authors":"Jill Bradshaw,&nbsp;Roseann Maguire,&nbsp;Amanda Gillooly,&nbsp;Christopher Hatton,&nbsp;Sue Caton,&nbsp;Andrew Jahoda,&nbsp;Edward Oloidi,&nbsp;Laurence Taggart,&nbsp;Stuart Todd,&nbsp;Richard Hastings","doi":"10.1111/jppi.70000","DOIUrl":"https://doi.org/10.1111/jppi.70000","url":null,"abstract":"<p>People with profound intellectual and multiple disabilities can be excluded from research and relatively little is known about the experiences of people with profound intellectual and multiple disabilities and their carers during COVID-19. This paper aims to further explore the impact on this group via information provided by paid and family carers. It focuses on key areas such as access to social and health services in addition to questions about health and well-being. In contextualising these results, some comparisons are made to impacts on other groups. This paper also explores what we might do better in future to support this population. Carers were invited to complete an online survey about their experiences and the experiences of people they supported during COVID-19 and to suggest what might have made life better. They were invited to complete this survey at four time points (waves) between December 2020 and December 2022. This paper reports on Waves 1–3, that is to August 2022. Services for people with profound intellectual and multiple disabilities reduced during COVID-19 and have yet to return to pre-pandemic levels. People with profound intellectual and multiple disabilities were reported to experience increased social isolation, deteriorating mental and physical health, increased behavioural signs of distress and reduced life skills. Three areas were identified regarding what would have made life better: opportunities for social contact and activities; improved access to health and social care services, and; consistent and responsive staff. Results are explored in the context of current challenges in service provision, including staff retention and shifts in staff culture during the pandemic.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70000","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142707873","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":"Talk-LD and Talk-LD+: A pilot trial of school-based interventions to challenge discrimination and promote inclusion","authors":"Roseann Maguire,&nbsp;Alastair Wilson,&nbsp;Richard P. Hastings,&nbsp;Kartina Scior,&nbsp;Andrew Jahoda","doi":"10.1111/jppi.12526","DOIUrl":"https://doi.org/10.1111/jppi.12526","url":null,"abstract":"<p>To counteract stigma and discrimination a series of five lessons Talk about Learning Disability (<i>Talk-LD</i>) to promote young people's understanding and acceptance of people with intellectual disabilities were developed for the Scottish secondary school curriculum. This study examined the feasibility of carrying out a randomised control trial comparing the delivery of the lessons alone with the lessons plus an attempt to promote positive contact between participating students and people with intellectual disabilities. The aim was to recruit and randomise 12 schools to receive the lessons alone or the lessons plus contact. The Attitudes Towards Intellectual Disability (ATTID) questionnaire was completed at baseline and a questionnaire about students' understanding of the lesson content was completed at follow-up alone. Twelve schools were recruited and randomised. The lessons were delivered to 23 classes across the 12 schools. Baseline data were obtained for 480 participants. However, school closures due to COVID-19 meant that follow-up data were only obtained from 220 students (six schools) prior to school closures. The attitude measure only detected change in one ATTID scale, indicating students may be more willing to interact with a person with intellectual disabilities post intervention. Three of the six schools randomised to the lessons plus contact group had plans in place for joint activities between students and young people with an intellectual disability. Despite the disruption caused by the Covid pandemic, the findings were encouraging in relation to future research on the <i>Talk-LD</i> lessons. The schools also engaged positively with the process of promoting positive contact with young people with an intellectual disability.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12526","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142435589","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":"Moving toward a time-based and balanced quality of life","authors":"Teresa Maria Sgaramella","doi":"10.1111/jppi.12530","DOIUrl":"https://doi.org/10.1111/jppi.12530","url":null,"abstract":"<p>Current complex life conditions and changing developmental contexts draw attention to the concept of <i>capabilities</i>, the various combinations of functions a person can do or can be, and the opportunities to achieve them. A future-oriented time perspective is a dimension along which individuals express meaning-making of experiences and expectations regarding their lives, a benchmark for the well-being and satisfaction of the quality of life they experience. Findings from research studies involving adults with disabilities and family members of persons with a disability provide evidence for a time-based model, an approach tapping into both the concept and measurement of quality of life and balancing both current and expected quality of life.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-10-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12530","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142429431","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":"Evaluation of an Australian community-based model of care for adults with intellectual and developmental disabilities undergoing procedures under sedation","authors":"Janet Golder,&nbsp;Reece Adams,&nbsp;Shenae Calleja,&nbsp;Michelle Templeton,&nbsp;Abby Foster","doi":"10.1111/jppi.12528","DOIUrl":"https://doi.org/10.1111/jppi.12528","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults with intellectual and developmental disabilities (IDDs) have higher healthcare needs, but experience difficulties accessing preventative healthcare. Despite this inequity, models of care that address barriers and provide customized treatment are limited, exacerbating vulnerabilities and poorer health outcomes. This study describes the development of a procedural model of care (PMOC) for adults with intellectual and developmental disabilities, and evaluates the sedation tier, exploring procedure and sedation outcomes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Development of the PMOC was informed by current evidence and themes identified in stakeholder consultation and literature. A retrospective cohort study evaluated the sedation option within the model, conducted at a community-based disability service in Melbourne, Australia. All records over a 14-month period were included. Descriptive statistics and univariate logistic regression analysis were used to analyze data.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The PMOC includes assessment, intervention, and evaluation tiers. Intervention options range from least to most invasive, culminating in the sedation level (mild; oral psychoactive, moderate; midazolam and nitrous oxide, high; general anesthetic). A total of 127 adults with IDDs received procedures under sedation; median age was 26 years, 61% lived with family, and 81% had multiple disabilities. A total of 197 procedures were referred to CDDH, including immunization (61%) and oral health reviews (23%), and resulted in 98% completion rate. Mild (<i>n =</i> 36) and moderate (<i>n =</i> 95) sedation were used for 67% of procedures. The PMOC correctly predicted 91% of sedation requirements. Living with family (OR 2.211, 95% CI 1.001–4.885, <i>p</i> = 0.05); immunization (OR 7.935, 95% CI 4.025–15.644, <i>p</i> &lt;0.001); and multiple disabilities (OR 3.064, 95% CI 1.123–8.362, <i>p</i> = 0.029) were associated with mild, moderate and high sedation options, respectively.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Models of care offering individualized interventions can support adults with IDDs to receive preventative procedures. Demographic variables may be able to predict sedation requirements. Wider application of this model may reduce health inequity within this vulnerable population.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-10-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12528","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142429488","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}