Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"Connecting locally: An examination of the role of service providers in supporting the social inclusion of adults with intellectual disabilities in their neighbourhoods","authors":"Geraldine Boland,&nbsp;Suzanne Guerin","doi":"10.1111/jppi.12419","DOIUrl":"10.1111/jppi.12419","url":null,"abstract":"<p>Article 19 of the UN Convention on the Rights of People with Disabilities calls for all people with disabilities to live independently and be included in their community. Adults with intellectual disabilities may live in neighbourhoods, but often have limited experience of social connectedness. This study aimed to examine the role of service provider organisations in supporting social inclusion in neighbourhoods of adults with intellectual disabilities. The understanding of social inclusion locally for adults with intellectual disabilities was explored and whether organisational policies (if any) had been drawn up to guide the support actions of staff. A mixed methods design was employed, with CEOs/service leaders of 40 service provider organisations completing an online survey. Follow-up telephone interviews were completed with a randomised sample. Data were analysed using descriptive statistics and qualitative content analysis. Service leaders understood social inclusion to encompass purposeful engagement that moved beyond mere physical presence. Individuals having a sense of connection to place and belonging to people who live locally included fostering mutually supportive connections with neighbours. Equality of access to local services and supports were underscored. Active citizenship and service provider/staff supports for a socially included life were highlighted. Almost all service leaders rated the role of service providers at organisational/strategic level as important. However, their values and beliefs revealed contrasting views on the appropriate level of visibility of service providers when supporting individuals. Close to two-thirds of service providers did not have an organisational policy regarding social inclusion in neighbourhoods. Developing specific service policies on social inclusion in neighbourhoods, based on the UNCRPD, and reflecting relevant national disability policies is proposed. This may enhance strategic planning and service providers decision-making on targeted resource allocation. Further implications for policy, practice and research arising from this study are discussed.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12419","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43020228","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":"Key learnings from COVID-19 to sustain quality of life for families of individuals with IDD","authors":"Rachael Wanjagua,&nbsp;Stevie-Jae Hepburn,&nbsp;Rhonda Faragher,&nbsp;Shaji Thomas John,&nbsp;K. Gayathri,&nbsp;Margaret Gitonga,&nbsp;Cecylia Francis Meshy,&nbsp;Lucena Miranda,&nbsp;Devis Sindano","doi":"10.1111/jppi.12415","DOIUrl":"10.1111/jppi.12415","url":null,"abstract":"<p>COVID-19 has very publicly had profound impacts on the health system of every country in the world. Over 4.5 million people have lost their lives. School closures worldwide where up to 1.6 billion of the world’s children have been out of school, are also prominent in world news. Behind these public impacts are the families. In this paper, we focus on the experiences of families with people with intellectual and developmental disabilities (IDD) through analysis of two data sets: the emerging research literature and contributions from our author team who have lived experience of intellectual and developmental disability in the context of COVID-19. From these two data sets, we discern five themes of the impact of the pandemic: on health, on education, on services and supports, on families and finally on relationships beyond the family. We conclude with lessons from those living with intellectual and developmental disabilities, the carers and the individuals themselves to draw implications for supporting families in the context of disability during future pandemics.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-03-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12415","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47643357","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":"Implementation of remote support services: Pre-COVID-19","authors":"Jordan B. Wagner,&nbsp;Marc J. Tassé,&nbsp;Gili Ornan","doi":"10.1111/jppi.12420","DOIUrl":"10.1111/jppi.12420","url":null,"abstract":"<p>In this national survey of departments of developmental disabilities services across the United States, we attempted to establish the number of the states that made remote support services available as an authorized service in some state Medicaid funded developmental disabilities waiver programs. Remote support services were defined as a service that uses technology to support an individual with developmental disabilities and is provided from a location outside of the person's home. Remote support services involve the use of technology to provide real-time assistance from a direct support professional from a remote location. We found that 18 of the 49 states (37%) that responded to our telephone survey reported offering some form of remote support services. This survey was conducted pre-COVID-19 and the implications of the availability of remote support services are discussed especially in light of COVID-19.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12420","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41876135","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":"Recruitment and work arrangements for employees with intellectual disability in competitive employment","authors":"Christian Wendelborg,&nbsp;Veerle Garrels,&nbsp;Hanne Marie Høybråten Sigstad,&nbsp;Evan E. Dean","doi":"10.1111/jppi.12418","DOIUrl":"10.1111/jppi.12418","url":null,"abstract":"<p>Norwegian employment policy, the activation policy, states that life on social security should be the last resort after exhausting all available activation measures. Despite this, people with intellectual disability are almost entirely excluded from the competitive labour market in Norway. This article highlights the conditions that promote employment of people with intellectual disability and factors that stimulate recruitment. This study explores (1) How do companies recruit employees with intellectual disability, including (a) how do private companies differ from public companies regarding recruitment and (b) which role does The Norwegian Labour and Welfare Administration (NAV) and upper secondary education play in this; (2) Which working arrangements do employees with intellectual disability have? and (3) What types of support do companies receive? A quantitative survey mapped the experiences of employers who have hired people with intellectual disability and highlighted factors that may promote recruitment. Most companies recruited people with intellectual disability with support from NAV. For approximately, one in five recruitments of employees with intellectual disability, collaboration with upper secondary education played a role in the hiring process. Social networks were a way into employment only in the private sector, and a larger share of private companies employed people with intellectual disability in ordinary positions without subsidies. About 27% of the companies did not receive any support when hiring employees with intellectual disability. Due to more flexible hiring regulations, there may be more structural factors promoting the recruitment of people with intellectual disability in the private sector than in the public sector. Further, the employment of people with intellectual disability in competitive labour may depend on policies and how policies are adapted and enforced by NAV employees. More extensive collaboration between upper secondary education and workplaces could also be beneficial to recruiting employees with intellectual disability.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12418","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43659626","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":"Online training for parents of children with developmental disabilities in a low-resource community: A pilot feasibility study","authors":"Adriana Kaori Terol,&nbsp;James D. Lee,&nbsp;Melanie R Martin Loya,&nbsp;Hedda Meadan","doi":"10.1111/jppi.12417","DOIUrl":"10.1111/jppi.12417","url":null,"abstract":"<p>Challenging behaviors interfere with children's learning, prosocial interactions, and family dynamics. Parents may benefit from receiving training in behavioral principles to prevent and reduce challenging behaviors, especially in low-resourced communities where services are scarce and scattered. This study implemented an adapted online training on behavioral principles with 15 parents of children with developmental disabilities in Paraguay. Analysis of the pretest and posttest assessment data indicated that parents' knowledge of behavioral principles overall increased, and some changes were found in the reported usage of positive parenting practices. Moreover, qualitative interviews with participants revealed that the intervention delivery in Paraguay was considered acceptable. Therefore, providing access to online training in low-resourced communities may be a feasible and accessible intervention for parents of children with developmental disabilities.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-03-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12417","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44111644","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 mental health and well-being of adults with intellectual disability during the COVID-19 pandemic: A narrative review","authors":"Yona Lunsky,&nbsp;Andrew Jahoda,&nbsp;Patricia Navas,&nbsp;Sabrina Campanella,&nbsp;Susan M. Havercamp","doi":"10.1111/jppi.12412","DOIUrl":"10.1111/jppi.12412","url":null,"abstract":"<p>Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to experience mental health difficulties and face barriers obtaining mental health care. COVID-related public health restrictions, combined with heightened challenges to obtain timely mental health care, have served to worsen this situation internationally, with a combination of new onset conditions and worsening mental health for those already struggling. In this narrative review, we summarize literature on the mental health of adults with ID during the COVID-19 pandemic to describe what is known based on clinician perceptions, existing administrative health data, family and staff perceptions, and self-report. In addition to noting similarities and differences in findings based on the source of information, we also explored how experiences differed depending on where and when the research was conducted. Based primarily on research conducted during the first six months of the pandemic, there is a consistent finding across sources of increased anxiety, stress, and isolation. This review also explored the delivery of virtual mental health care and the impact of pandemic-based mental health interventions. There have been very few research studies evaluating clinical care during this time but clinicians have managed to provide supports virtually, which has been evaluated positively by some individuals. This narrative review concludes by identifying gaps in the literature and suggests key directions for future mental health research, policy, and practice efforts. Any mental health efforts now and during pandemic recovery need to have an understanding of how the mental health needs and services for adults with ID have evolved over the course of the pandemic. Further research is needed on the impact of both clinical interventions and other nonclinical efforts on the mental health of people with ID.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9115206/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49574739","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":"Ethics framework and recommendations to support capabilities of people with intellectual and developmental disabilities during pandemics","authors":"William F. Sullivan,&nbsp;Petra Björne,&nbsp;John Heng,&nbsp;Ruth Northway","doi":"10.1111/jppi.12413","DOIUrl":"10.1111/jppi.12413","url":null,"abstract":"<p>A growing body of knowledge highlights the negative impact of the COVID-19 pandemic on the health and well-being of many people with intellectual and developmental disabilities (IDDs) and their caregivers. The underlying reasons are not only due to biomedical factors but also ethical issues. They stem from longstanding and pervasive structural injustices and negative social attitudes that continue to devalue people with IDD and that underlie certain clinical decisions and frameworks for public-health policies during this pandemic. Unless these fundamental ethical shortcomings are addressed, pandemic responses will continue to undermine the human rights and well-being of people with IDD. This paper proposes an ethics framing for policy and practices regarding clinical care and public health based on Martha Nussbaum's approach to Capability Theory. Such a framework can reorient healthcare professionals and healthcare systems to support the capabilities of people with IDD to protect, recover, and promote health and well-being. It could be applied during this pandemic and in planning for future pandemics. The paper presents some practical recommendations that follow from applying this framework.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12413","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47330182","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":"COVID-19: Evolving challenges and opportunities for residential and vocational intellectual disability service providers","authors":"Henrietta Trip,&nbsp;Ruth Northway,&nbsp;Elizabeth Perkins,&nbsp;Brigit Mirfin-Veitch,&nbsp;Reece Adams","doi":"10.1111/jppi.12414","DOIUrl":"10.1111/jppi.12414","url":null,"abstract":"<p>The sustainability of service provision continues to be a challenge in the field of intellectual disability due to changes in delivery as part of intermittent or ongoing lockdown requirements during the COVID-19 global pandemic. There are many facets to this that may have temporary or permanent impacts not only on the sector, but ultimately for service access and outcomes for people with intellectual disability themselves. This narrative literature review identifies both opportunities for, and impacts on, service providers across jurisdictions. These are explored in terms of the effects that suspension, adaptation, continuity or the cessation of service delivery have had, and those that are projected. Such impacts include, but are not limited to, changes in service access and delivery, employment roles and responsibilities, financial sustainability and the need to diversify the services and supports provided and how they are delivered. The relevance of these impacts for family carers and people with intellectual disability is also discussed. Nonetheless, there have also been opportunities which inform the shape of service delivery and pandemic planning into the future.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-02-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12414","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42793352","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":"Supporting the needs of people with intellectual and developmental disabilities 1 year into the COVID-19 pandemic: An international, mixed methods study of nurses' perspectives","authors":"Melissa L. Desroches,&nbsp;Kathleen Fisher,&nbsp;Sarah Ailey,&nbsp;Judith Stych,&nbsp;Shirley McMillan,&nbsp;Paul Horan,&nbsp;Daniel Marsden,&nbsp;Henrietta Trip,&nbsp;Nathan Wilson","doi":"10.1111/jppi.12411","DOIUrl":"10.1111/jppi.12411","url":null,"abstract":"<p>As the largest public health crisis within a century, the COVID-19 pandemic has caused long-term disruption in the support systems of people with intellectual and developmental disabilities (IDD) across the globe. The purpose of this study was to investigate challenges and ameliorative strategies to supporting the basic care needs of people with IDD 1 year into the pandemic, as experienced by nurses who specialize in IDD nursing. We surveyed a convenience sample of 369 nurses from across North America, Europe, and Australasia using a 52-item online questionnaire. Descriptive statistics were used to rank the greatest challenges and the degree of support available to nurses, and manifest content analysis was used to analyze open-ended responses related to ongoing challenges and ameliorative strategies. Results of descriptive analyses revealed consistent findings across global regions in terms of the challenges faced by nurses; the greatest challenges related to supporting or enabling socialization with family/friends, ensuring adequate day programming or educational services, identifying/planning alternative entertainment activities, ensuring adequate staffing of familiar support workers and caregivers, and managing challenging behaviors related to change in daily routine and activities. Nurses described a considerable degree of support offered by their organizations in terms of flexibility in scheduling related to family obligations and paid time off for COVID-19-related isolation and quarantine. Content analysis of open-ended survey responses revealed numerous challenges related to: (1) client socialization, meaningful activity, and mental/behavioral health; (2) interpreting, keeping up with, and helping others to understand COVID-19 guidelines; (3) access to, quality of, and continuity of care; and (4) COVID-19 fatigue and the influence of time. Overall, our study highlights ongoing issues with access to care and support, exacerbated by the pandemic, and the importance of having meaningful activity and socialization for overall well-being of people with IDD during a long-term public health crisis.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12411","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44983062","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":"Preventing, mitigating, and managing future pandemics for people with an intellectual and developmental disability - Learnings from COVID-19: A scoping review","authors":"Laurence Taggart,&nbsp;Peter Mulhall,&nbsp;Rosie Kelly,&nbsp;Henrietta Trip,&nbsp;Bill Sullivan,&nbsp;Eva Flygare Wallén","doi":"10.1111/jppi.12408","DOIUrl":"10.1111/jppi.12408","url":null,"abstract":"Many people with an intellectual and developmental disability (IDD) are biologically, socially, and economically/politically vulnerable to developing SARS‐COV‐2 (COVID‐19) compared to the general population. Most governments have developed public‐health policies and strategies to address the challenges that COVID‐19 has presented. These policies and strategies have been based upon the general population and in fact could be detrimental to the health and well‐being of people with IDD. This paper provides a review of the key learning points emerging from the COVID‐19 literature, together with guidance for the provision of services and government interventions for people with an IDD for future pandemics. Using guidance from the Joanna Briggs Institute, a scoping review was used to explore the current literature (scientific and grey) on IDD and COVID‐19. Three core themes emerged from the review. Prevention/protection: User‐friendly accurate accessible information, handwashing and social distancing, Personal Protective Equipment, shielding, track and trace, testing, vaccine compliance/hesitancy, and training. Mitigation: Making reasonable adjustments both to where people live, and to community healthcare/clinical practice;and the use of technology as a pandemic‐response strategy. Treatment/Management: Access to acute hospitals and lifesaving equipment, using a suitable clinical fatality assessment instrument, stopping Do Not Resuscitate notices, individualised care plans and hospital passports, family/paid carers to support people in hospitals;and use of telehealth in clinical care. This is the first international scoping review that provides a narrative synthesis of emerging themes related to the COVID‐19 pandemic and people with an IDD. This paper highlights themes related to preventing, mitigating, and treating/managing the care of this population during the COVID‐19 pandemic, which can inform future public‐health policies. This paper also exposes the negative impacts of public‐health interventions in both High‐Income Countries and Low‐Middle Income Countries for this population including lapses in upholding human rights. These data provide a basis for learning from the COVID‐19 pandemic in planning for future pandemics. [ FROM AUTHOR] Copyright of Journal of Policy & Practice in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-01-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12408","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44547086","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}