Sara Santilli, Maria Cristina Ginevra, Courtney Bishop, Laura Nota
{"title":"After us, together with us: Quality of life in adults with disabilities in an inclusive and sustainable future","authors":"Sara Santilli, Maria Cristina Ginevra, Courtney Bishop, 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}
Heather Welsh, Alistair Farquharson, Laura Nicholson
{"title":"Remote consultation: The experiences of community intellectual disability teams","authors":"Heather Welsh, Alistair Farquharson, 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}
Jan Šiška, Julie Beadle-Brown, Renáta Tichá, Roger Stancliffe, Brian Abery, Šárka Káňová
{"title":"Advances and gaps in policy, practice, and research in transition for students with intellectual and developmental disabilities across four countries","authors":"Jan Šiška, Julie Beadle-Brown, Renáta Tichá, Roger Stancliffe, Brian Abery, 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}
Dale Metcalfe, Karen McKenzie, George Murray, Alex Shirley
{"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, Karen McKenzie, George Murray, 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}
James Houseworth, Renáta Tichá, Sandra L. Pettingell, Roger J. Stancliffe, Julie Bershadsky
{"title":"Transitional challenges: Psychotropic medication and residential setting among young adults with intellectual disabilities","authors":"James Houseworth, Renáta Tichá, Sandra L. Pettingell, Roger J. Stancliffe, 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}
Maria C. den Boer, Sanne A. H. Giesbers, Mireille G. D. de Beer, Kayleigh van Beurden, Petri J. C. M. Embregts
{"title":"People with intellectual disabilities as peer trainers and their coaches: Impact and experiences in a Dutch training course","authors":"Maria C. den Boer, Sanne A. H. Giesbers, Mireille G. D. de Beer, Kayleigh van Beurden, Petri J. C. M. Embregts","doi":"10.1111/jppi.12520","DOIUrl":"https://doi.org/10.1111/jppi.12520","url":null,"abstract":"<p>The value of experts by experience within the field of intellectual disabilities is receiving greater recognition. This study explored the experiences of peer trainers regarding the impact of being a (1) trainee in a train the trainer course (<i>n</i> = 9), and (2) peer trainer in a Dutch training course (<i>n</i> = 6) aimed towards the self-growth of people with intellectual disabilities. In addition to examining the experiences of peer trainers themselves, we investigated the perspective of coaches (<i>n</i> = 4) regarding the experiences of peer trainers. Peer trainers and coaches were questioned using individual and group interviews. Data were analysed using thematic analysis. Three themes were identified: (1) Growing and flourishing, (2) Performing a meaningful role for your peer and (3) Experiencing reciprocity and a sense of belonging. Working as a peer trainer was valuable and produced several benefits, ranging from increased self-confidence to feelings of belonging and reciprocity.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12520","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141973727","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}
Mary-Ann O'Donovan, Emer Lynch, Linda O'Donnell, Kathyan Kelly
{"title":"Homelessness—The perspectives of people with intellectual disability and/or Autistic spectrum disorder and their families","authors":"Mary-Ann O'Donovan, Emer Lynch, Linda O'Donnell, Kathyan Kelly","doi":"10.1111/jppi.12519","DOIUrl":"https://doi.org/10.1111/jppi.12519","url":null,"abstract":"<p>People with intellectual disability (ID) and/or autism spectrum disorder (ASD) are over-represented in the homelessness population. A lack of available and suitable social housing leads to an over-reliance on a private rental market where high rents are prevalent. Yet, people with ID and/or ASD, are more at risk of living in poverty and as such excluded from the private rental market. The current study reports on the lived experience of homelessness for a sample of people with ID and/or ASD and families supporting adult /children with ID/ASD. Their stories illuminate the complexity and challenges in securing a stable, safe and secure home.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12519","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141631223","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}
Elena Gil-Clemente, Ana Millán Gasca, Rebeca Paricio Badías
{"title":"Involving parents and family environment for enhancing the mathematics education of children with Down syndrome","authors":"Elena Gil-Clemente, Ana Millán Gasca, Rebeca Paricio Badías","doi":"10.1111/jppi.12518","DOIUrl":"https://doi.org/10.1111/jppi.12518","url":null,"abstract":"<p>A research project involving 16 children with Down syndrome aged 4–14 approaching mathematics at home was developed during the COVID-19-lockdown in Spain. In the research project a series of 14 short mathematical challenges were designed and delivered in a WhatsApp group used as a communication and documentation tool with the participating families. Videos recorded by them were subsequently analyzed with the purpose of describing and analyzing: (a) the experience children live in contact with informal situations underlying the concepts of number and shape and (b) the engagement of families. The choice of these informal situations is based upon recent research that shows the need to consider the wide range of occasional experiences with mathematical ideas children have in their family prior to schooling. In order to design productive mathematical activities we drew on our past research for the choosing of crucial mathematical issues (whole numbers, plane geometry, and solids). We discuss the evolution in parents from practical help to deep engagement, and the fact that notwithstanding diversity in family contexts, engagement and an especially joyful approach to mathematics emerged. The use of videos opens up a path to the possibility to online learning for children with Down syndrome.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-07-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12518","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141597018","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":"Exploring the implementation of COVID-19 infection control guidance in congregate living settings supporting those with intellectual and developmental disabilities","authors":"Michelle Rianto, Matthew Freeman, Briano Di Rezze","doi":"10.1111/jppi.12515","DOIUrl":"https://doi.org/10.1111/jppi.12515","url":null,"abstract":"<p>The COVID-19 pandemic has put the lives of people with intellectual and developmental disabilities (IDDs) at risk, including those residing in congregate living settings. This study aimed to explore the experiences of congregate living agencies supporting individuals with IDD when implementing infection control guidance during the COVID-19 pandemic for the purpose of identifying recommendations for future implementation. Interpretive description was the methodological approach used for this qualitative study. Data were collected through a semi-structured focus group with administrative personnel from developmental services (DS) congregate living agencies supporting adults with IDD in Ontario, Canada. Data were analyzed using thematic analysis. Our findings identified successes and challenges related to the implementation of infection control guidelines in practice, as well as strategies used during the implementation of guidelines. Five main themes were identified—Communication, Collaboration, Finding and Managing Resources, Agency Capacity, and Future Considerations. Effective communication and collaboration within agencies, as well as between agencies and local public health units or governing ministries, led to the successful implementation of infection control guidance. Prior experience with pandemics, as well as managers with knowledge of infectious disease and infection control, was crucial in interpreting and implementing COVID-19 infection control guidance. DS agencies experienced successes and challenges when implementing infection control guidelines. The needs of DS agencies and individuals with IDD should be prioritized when developing infection control guidance to ensure that implementation is feasible and appropriate for congregate living settings and the population supported.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2024-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12515","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141488856","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}