Journal of Policy and Practice in Intellectual Disabilities最新文献

{"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}

{"title":"After us, together with us: Quality of life in adults with disabilities in an inclusive and sustainable future","authors":"Sara Santilli,&nbsp;Maria Cristina Ginevra,&nbsp;Courtney Bishop,&nbsp;Laura Nota","doi":"10.1111/jppi.12527","DOIUrl":"https://doi.org/10.1111/jppi.12527","url":null,"abstract":"<p>Due to economic and technological progress, life expectancy is constantly developing, thus the European senior generation is ever-increasing. Such demographic modifications have far reached consequences on social protection systems and society. Specifically, the last 20 years have also seen a significant increase in life expectancy for people with disabilities and their elderly parents who care for them. Therefore, this contribution provides an overview of the quality of life for adults with intellectual disabilities and their elderly parents. Specifically, this paper examines the notion of quality of life, especially in its relationship with sustainability, inclusion, and social justice. Lastly, it examines the contextual factors that contribute to promoting or hindering the quality of life of individuals with intellectual disabilities and the impact on social inclusion, sustainability, and social justice.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12527","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142428945","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":"Specialized medical equipment for people with intellectual and developmental disabilities allocated in Home and Community Based Services","authors":"Carli Friedman","doi":"10.1111/jppi.12525","DOIUrl":"https://doi.org/10.1111/jppi.12525","url":null,"abstract":"<p>Specialized medical equipment, includes both durable medical equipment—nondisposable, reusable medical equipment—and nondurable medical equipment—disposable, often one time use medical supplies. The aim of this study was to examine if, and how, states allocated specialized medical equipment for people with IDD in their Medicaid HCBS programs. To do so, we examined Medicaid HCBS 1915(c) waivers for people with IDD from across the United States. We found 55 waivers (51.40%) from 27 states (60.00%) provided 71 specialized medical equipment services to people with IDD. HCBS waivers projected spending $61 million on specialized medical equipment for 33 305 people with IDD. The average annual spending per person was $2433. In addition to helping promote community living and integration, for some people with IDD, specialized medical equipment can be life sustaining; as such, it is critical that unmet needs for specialized medical equipment not go unaddressed.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12525","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142275056","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":"Remote consultation: The experiences of community intellectual disability teams","authors":"Heather Welsh,&nbsp;Alistair Farquharson,&nbsp;Laura Nicholson","doi":"10.1111/jppi.12523","DOIUrl":"https://doi.org/10.1111/jppi.12523","url":null,"abstract":"<p>The use of remote technology, via telephone and video, was rapidly introduced across health services at the outset of the COVID-19 pandemic and is likely to future. This study investigated the experience and opinions of staff working in Specialist Intellectual Disability Community Teams, with the aim of clarifying the advantages and disadvantages of remote technology in this setting and helping to guide service development. Fourteen members of staff from seven different health disciplines across seven NHS Greater Glasgow and Clyde Community Intellectual Disability Teams were interviewed using a semi-structured format. Thematic analysis identified three overarching themes: use of remote technology; efficiency and limitations. Participants reported clear efficiency advantages using remote technology but some challenges with communication and completing comprehensive patient assessments. There was support for the ongoing use of remote technology in the assessment and treatment of people with intellectual disability, particularly for multidisciplinary meetings. However, participants also described a need for face to face assessments, particularly for people with more severe intellectual disability, with complex care needs or when particular assessments are required (such as a new patient appointment or physical assessment).</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142169877","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":"Advances and gaps in policy, practice, and research in transition for students with intellectual and developmental disabilities across four countries","authors":"Jan Šiška,&nbsp;Julie Beadle-Brown,&nbsp;Renáta Tichá,&nbsp;Roger Stancliffe,&nbsp;Brian Abery,&nbsp;Šárka Káňová","doi":"10.1111/jppi.12524","DOIUrl":"https://doi.org/10.1111/jppi.12524","url":null,"abstract":"<p>The difficulties faced by youth with intellectual and developmental disabilities (IDDs) and their families as they move into adulthood are widely documented. The aim of the paper is to explore the current situation in terms of transition processes and outcomes in four countries (the US, UK, Australia and Czech Republic) and identify commonalities and differences that help elucidate what might determine different outcomes. Two research methods—expert knowledge and rapid literature review—were combined to identify sources from which information on transition policy, processes, support practices and outcomes was extracted and synthesised. This review identified gaps in the research evidence including inadequate collection and use of data to drive policy and determine effectiveness, limited evidence-based models or frameworks for successful transition. There was little transition research that included the voices of young people with IDD. More research is necessary to study the practices of highly successful programmes, and to explore the impact of transition programmes and disability support services on a broader range of outcomes, capturing the experiences of young people themselves and identifying factors that determine successful outcomes.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12524","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142169858","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":"“It does change the narrative for health and social care” views of clinical and homeless service staff about the use of intellectual disability screening tools within homeless support pathways in the north of England","authors":"Dale Metcalfe,&nbsp;Karen McKenzie,&nbsp;George Murray,&nbsp;Alex Shirley","doi":"10.1111/jppi.12522","DOIUrl":"https://doi.org/10.1111/jppi.12522","url":null,"abstract":"<p>Homelessness is a worldwide health inequality. People with intellectual disability represent a relatively high proportion of homeless people, and for many their intellectual disability is not recognised. The study intended to obtain stakeholder views about how intellectual disability screening can be integrated into the support pathway for people who are homeless. A qualitative approach was taken using Thematic Analysis. Nine staff, who work with homeless people or are involved in the intellectual disability assessment pathway, were interviewed. Analysis produced three themes, each containing two subthemes. ‘Current routes to support’ investigates experiences of the existing pathway; ‘Labels’, explores views about making intellectual disability visible; ‘Creating a pathway,’ outlines ideas about developing and implementing a screening pathway between services. The results help inform how current practices of identifying people with intellectual disability might be improved and the role of screening in this. These results, when combined with other research around screening tools, provide insight into how intellectual disability screening can be integrated within services.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-09-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12522","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142158667","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":"Transitional challenges: Psychotropic medication and residential setting among young adults with intellectual disabilities","authors":"James Houseworth,&nbsp;Renáta Tichá,&nbsp;Sandra L. Pettingell,&nbsp;Roger J. Stancliffe,&nbsp;Julie Bershadsky","doi":"10.1111/jppi.12521","DOIUrl":"https://doi.org/10.1111/jppi.12521","url":null,"abstract":"<p>As youth with intellectual and developmental disabilities (IDD) are transitioning from the school systems and special education supports, many of them are moving into the adult service system (e.g., Vocational Rehabilitation, Home and Community-Based Services). Thus, in addition to adolescence being a source of many psychological and behavioral needs, the change in service systems often leads to uncertainty and anxiety. Psychotropic medications tend to be used to treat challenging behavior and psychological conditions (e.g., depression, anxiety, psychosis). This study used National Core Indicators-In-Person Survey 2020–2021 data to explore the prevalence of psychotropic medication use among two groups of people with IDD: disability service users of transition age (18–25 years) and disability service users of adult age (26–45 years) and the role of residential settings (where one lives) as related to psychotropic medication use. The results indicated that adults (aged 26–45 years) are more likely to be prescribed psychotropic medications. This appears to be driven by the larger number of transition-aged adults who still live with family, where prescription rates are much lower. Psychotropic drug use is an important issue due to its potential to lead to unintended negative consequences that affect health, social inclusion, and self-determination if not carefully and effectively administered.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141980461","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}