Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"Using the quality of life framework to operationalize and assess the CRPD articles and the Sustainable Development Goals","authors":"Laura E. Gómez,&nbsp;M. Lucía Morán,&nbsp;Patricia Navas,&nbsp;Miguel Ángel Verdugo,&nbsp;Robert L. Schalock,&nbsp;Marco Lombardi,&nbsp;Eva Vicente,&nbsp;Verónica M. Guillén,&nbsp;Giulia Balboni,&nbsp;Chris Swerts,&nbsp;Susana Al-Halabí,&nbsp;M. Ángeles Alcedo,&nbsp;Asunción Monsalve,&nbsp;Ivan Brown","doi":"10.1111/jppi.12470","DOIUrl":"10.1111/jppi.12470","url":null,"abstract":"<p>This article describes how rights, the United Nations Sustainable Development Goals (SDGs), and the quality of life (QOL) framework are closely interrelated. Although legislation can be used as a tool for the practical application of QOL principles, QOL assessment information is required to further develop legislation and monitor the fulfillment of laws, policies, and the SDGs. A validated QOL model, which provides a set of concepts that can be one useful way for understanding and assessing QOL, can also function to assess many of the rights and goals promulgated in the Convention on the Rights of Persons with Disabilities (CRPD) and in the SDGs. This article illustrates the overlap between the CRPD, SDGs and QOL using the <i>#Rights4MeToo Scale</i>, a new measurement instrument for people with intellectual and developmental disabilities (IDD). The instrument's value lies in its potential to: (a) raise awareness about the rights enshrined in the CRPD; (b) design, implement, and evaluate the effectiveness of interventions aimed at facilitating the exercise of those rights and the achievement of the SDGs; and (c) ultimately improve the QOL of people with IDD.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12470","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43161565","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":"Using the consensus group method to select the best screening tools for autism and intellectual disability for use with Nigerian adolescents","authors":"Eziafakaku Uchechukwu Nwokolo,&nbsp;Glynis H. Murphy,&nbsp;Anne-Marie Mensink,&nbsp;Xavier Moonen,&nbsp;Peter E. Langdon","doi":"10.1111/jppi.12466","DOIUrl":"10.1111/jppi.12466","url":null,"abstract":"<p>Diagnosing autism or ID using a gold-standard tool can be time-consuming, costly, and requires training, which is generally limited in Nigeria, and the rest of Africa. Screening, on the other hand, can be quick and effective, with minimal training depending on the tool (Iragorri &amp; Spackman, <i>Public Health Reviews</i>, 2018;39(1):17), thus making the availability of short screeners a necessity in Nigeria, and the rest of Africa. We identified four screening tools through a previously completed systematic review (Nwokolo et al., <i>Review Journal of Autism and Developmental Disorders</i>, 2022;1–23.), two (SCQ and AQ-10) for autism and two (SCIL and CAIDS-Q) for ID, which appeared appropriate for validation for use within African nations. The Nominal Group Technique was used with a purposive group of professionals, parents, and laypersons to select and adapt the existing screening tools for autism and ID for use with older children and adolescents in Nigeria. The group examined the screening tools for cultural relevance, face and content validity. Following the discussions, items were either (1) accepted in the original form or (2) more culturally appropriate examples chosen if at least 75% of participants agreed. The group selected the SCQ for autism and the SCIL for ID. The minimum agreement on all autism and ID measures items was 84%, and this indicated the measures had face and content validity for use within Nigeria. Following the recommendations and consensus of the group, the SCQ and the SCIL 14–17 were agreed on as measures to be validated with the Nigerian adolescents, with only a small number of adjustments needed to allow for different use of language, customs and environment in the Nigerian context.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12466","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41662149","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 Quality of Life Supports Model as a major component in applying the quality of life paradigm","authors":"Miguel Ángel Verdugo,&nbsp;Robert L. Schalock,&nbsp;Laura E. Gómez","doi":"10.1111/jppi.12468","DOIUrl":"10.1111/jppi.12468","url":null,"abstract":"<p>Social change is built on paradigms and models. A paradigm needs an operational action model to successfully implement the paradigm, and an operational model needs a paradigm to give it credibility and content. This article describes the Quality of Life Supports Model (QOLSM) as a major pathway for applying the quality of life (QOL) paradigm. The QOLSM integrates the concepts of QOL and individualized supports. The article describes and illustrates: (a) the four elements of the QOLSM (core values, individual and family QOL domains, systems of supports, and facilitating conditions); and (b) the use of the QOLSM in the field of intellectual and developmental disabilities (IDDs) as a framework for supports provision. The article also discusses how the QOLSM represents a value-based and actionable model that should be effective for solving problems regarding services and supports to people with IDD, developing new knowledge, making meaningful change, being evaluated, and contributing both theoretically and operationally to the field.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-08-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12468","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49145937","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":"Voting status of people with an intellectual disability in four French–speaking cantons of Switzerland: A survey","authors":"Barbara Fontana-Lana,&nbsp;Isabelle Petragallo,&nbsp;Manon Bach,&nbsp;Geneviève Petitpierre","doi":"10.1111/jppi.12465","DOIUrl":"10.1111/jppi.12465","url":null,"abstract":"<p>Switzerland is a direct democracy, so its citizens are very often called to vote on various issues. Gaining voter status is, however, a very difficult process for many Swiss citizens with intellectual disability. This research describes the voting status of people with intellectual disability in four French–speaking cantons of Switzerland. It tries to understand systemic or structural factors, such as the guardianship legislation and the legal frameworks, that might have an impact on the voting status of these people. Three hundred individuals with intellectual disability (18–72 years) took part in the study. They were recruited in 11 facilities through a full selection or a letter-cluster sampling procedure depending on the age group. A questionnaire for each participant was anonymously completed by a support person in the facilities. The questionnaire was constructed with the assistance of self–advocates with intellectual disability, as well as that of people with various roles in decisions regarding voting rights, or providing support to people with intellectual disability, in the participating cantons. Descriptive analyses have been used. The results show that on average slightly more than one person with intellectual disability out of two received voting material, and about one out of two used it. Non-receipt of voting material is significantly linked to general curatorship, higher financial allowance, living in less independent conditions and/or working in the most protective sectors. People who use their rights more are those who live in more protective environments. Having an intellectual disability implies a higher risk of being deprived of one's political rights, even when the law does not systematically prescribe such a restriction. Even a tailor-made gradual guardianship system can result in rigid applications of the law, characterized by illegitimate deprivation of rights, such as the right to vote.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12465","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48356900","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 are the priorities for health data for adults with intellectual and developmental disabilities? It varies by whom you ask","authors":"Gloria Krahn,&nbsp;Katherine Cargill-Willis,&nbsp;Meredith Raymond,&nbsp;Alexandra Bonardi,&nbsp;Susan Havercamp,&nbsp;Jennifer Johnson","doi":"10.1111/jppi.12464","DOIUrl":"10.1111/jppi.12464","url":null,"abstract":"<p>Numerous countries have recognized the need for improved surveillance data on the health of persons with intellectual and developmental disabilities (IDD). Federal agencies need additional information about the prevalence and health of persons with IDD to guide decisions about policies and programs. Without such data, health inequities and health needs of people with IDD can go unrecognized and be ignored, and resources may be misdirected. The priority areas for needed information, however, have not been well documented. To determine priorities for health data for persons with IDD, we conducted focus groups with three types of stakeholders from around the United States: researchers/practitioners, adults with IDD, and family members. Focus group dialogue was coded for themes and compared across stakeholder categories. Themes common to all groups included valuing people with IDD and respecting their self-determination; affirming the need for data including longitudinal data; holding a holistic view of physical, mental, social, and sexual health; and access to quality health care, medications, and assistive equipment. Each group also contributed unique ideas such as importance of trust for disclosure of private information, stereotypes and discrimination, and social influences on health. Stakeholders identified specific health conditions to monitor, including COVID-19. Findings have implications for establishing a health surveillance data system and for practice more generally. Health needs to be considered holistically, including physical, mental, social, and sexual health. A data framework needs to extend beyond a cross-sectional comparative framework to include longitudinal tracking and monitoring conditions unique to persons with IDD. People with IDD may not trust nor disclose sensitive information about their disability and health to support persons and surveyors, which has implications for under-reporting of prevalence of IDD and validity of proxy-reporting. Input from multiple stakeholders is fundamental to developing a usable and relevant data collection system.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45157878","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":"The ontology and epistemology shaping our understanding of inclusion: A critical review of the research literature on disability and inclusion","authors":"Claire Spivakovsky,&nbsp;Keith McVilly,&nbsp;Ms Tessa-May Zirnsak,&nbsp;Susan Ainsworth,&nbsp;Lorraine Graham,&nbsp;Matthew Harrison,&nbsp;Victor Sojo,&nbsp;Lindsey Gale,&nbsp;Anna Genat","doi":"10.1111/jppi.12461","DOIUrl":"10.1111/jppi.12461","url":null,"abstract":"<p>People with disability continue to face barriers to substantive and meaningful inclusion in accommodation and community settings. The aim of this systematic review was to examine the characteristics of the literature on ‘inclusion’, ‘integration’, ‘exclusion’, and ‘segregation’ for people with disability in accommodation and community settings. This literature is important because it provides the evidence base that informs policy and practice. We identified 457 articles that primarily related to the experiences of people with intellectual disability and psycho-social disability. We found: (1) the volume of publications relating to the ‘inclusion’, ‘integration’, ‘exclusion’ and ‘segregation’ of people with disability in accommodation and community living settings has increased each year since 2006; (2) high-income western countries were overrepresented in research outputs; (3) most research has been undertaken in the health sciences; (4) only 30% of literature directly engaged with people with disability; (5) less than 50% of the publications we reviewed (223 out of 457 manuscripts) identified inclusion, integration, exclusion and segregation as their primary focus; (6) ‘inclusion’, ‘integration’, ‘exclusion’ and ‘segregation’ were predominantly used in the context of specific populations—psycho-social disability and intellectual disability; (7) there is great variation in the attention paid to the experiences of different communities of people with disability; and (8) the notable absence of current scholarly literature on the experiences and outcomes of people with disability living at home with parents and/or siblings. Each of these findings have important implications for the research agenda, policy, and practice.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-06-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12461","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42446963","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 monitoring support services for people with intellectual and developmental disabilities","authors":"Carli Friedman","doi":"10.1111/jppi.12463","DOIUrl":"10.1111/jppi.12463","url":null,"abstract":"<p>While remote monitoring supports have many benefits and the use of remote supports for people with intellectual and developmental disabilities (IDD) is increasing, they are a relatively new technology for IDD service provision and yet to be widely available. However, during the COVID-19 pandemic, there was a rapid uptake in technology in Home and Community-Based Services (HCBS) for people with IDD, including the expansion of telehealth and remote supports. The aim of this study was to examine if, and, how, remote monitoring support services were provided to people with IDD in HCBS across the United States in fiscal year (FY) 2021. To do so, we analyzed Medicaid HCBS 1915(c) waivers for people with IDD. In FY 2021, 10 states (22.22%) provided remote support services to people with IDD through 19 HCBS waivers (17.76%); they provided a total of 36 different remote monitoring services. A total of $22.4 million was allocated for remote support services for 3039 people with IDD. We found states often provided remote support services to people with IDD in HCBS to promote independence, health, and welfare, and reduce and/or replace services. States implemented a number of rules and requirements to help keep people with IDD safe while remote support services were being used, including informed consent, encryption, emergency backup plans, and the prohibition of use in private spaces. Further attention to remote supports in HCBS is necessary to ensure that people with IDD who want to utilize these services are able to do so.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49592044","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":"Policy on sexual abuse: A survey study amongst managers of care facilities for individuals with intellectual disability in the Netherlands","authors":"Manon J. Smit,&nbsp;Mia Scheffers,&nbsp;Claudia Emck,&nbsp;Jooske T. van Busschbach,&nbsp;Lara Engelsman,&nbsp;Peter J. Beek","doi":"10.1111/jppi.12462","DOIUrl":"10.1111/jppi.12462","url":null,"abstract":"<p>Individuals with intellectual disability living in a care facility are at high risk of sexual abuse. Formal policies on sexual abuse within these care facilities and their effective implementation are a prerequisite to reducing the risk of sexual abuse in this group. The present study aimed to determine the state of affairs in this regard in the Netherlands and identify areas of improvement regarding both policy formulation and implementation. An online survey was sent to the management boards of 129 Dutch care facilities for individuals with intellectual disability. Sixty-nine managers completed the survey on behalf of their care facility. Descriptive statistics were used to characterize the state of affairs regarding policies on sexual abuse. Areas of improvement reported by the managers were examined qualitatively by thematic analysis. Most care facilities complied with the national legal requirements on sexual abuse, which include the availability of a protocol on sexual abuse and mandatory reporting. It varied across the care facilities to what extent the protocols on sexual abuse are brought to the staff's attention and used in practice. About half of them provided no staff training on the protocol on sexual abuse, while nearly one-third of the care facilities provided no organizational protective factors on sexual abuse, such as a special-task official on sexual abuse, sexuality or sexual abuse department, or cooperation with the vice squad. Most areas of improvement reported by the managers pertained to the need for staff training and the improvement of practical use of policies and protocols on sexual abuse. In conclusion, the availability of policies and protocols on sexual abuse in care facilities for individuals with intellectual disability does not guarantee a caring culture in which these policies and protocols are implemented effectively, and in which sexual abuse is prevented and detected in a timely way.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12462","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45263985","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-determination and quality of life of people with intellectual and developmental disabilities: Past, present, and future of close research paths","authors":"Cristina Mumbardó-Adam,&nbsp;Eva Vicente,&nbsp;Giulia Balboni","doi":"10.1111/jppi.12460","DOIUrl":"10.1111/jppi.12460","url":null,"abstract":"<p>In recent decades, research in the field of intellectual and developmental disabilities has targeted self-determination and quality of life constructs. Quality of life has been extensively studied within various theoretical frameworks. It has been used to guide the provision of appropriate support in daily life. In addition, a vast body of scientific literature has focused on the theoretical and practical underpinnings of self-determination as a construct in itself. To understand how self-determination is an essential supporting concept in the quality of life paradigm, this brief report unravels the complementary but unique role that each construct (quality of life and self-determination) embodies. Furthermore, we discuss the role of self-determination in the scientific literature and in the quality of life of people with intellectual and developmental disabilities, reflecting on how both lines of research can converge and be aligned from a common approach. The aim is to drive attention to areas of future research development that strengthen understanding of quality of life and the self-determination construct.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-05-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12460","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44210715","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":"How I got here: Career influences on healthcare professionals who work with persons with intellectual and developmental disabilities","authors":"Hannah P. McCann,&nbsp;Sydnie E. Smith,&nbsp;Richard C. Urbano,&nbsp;Elisabeth M. Dykens,&nbsp;Robert M. Hodapp","doi":"10.1111/jppi.12459","DOIUrl":"10.1111/jppi.12459","url":null,"abstract":"<p>Although increasing the healthcare workforce serving those with intellectual and developmental disabilities (IDD) remains critical, we know little about how current healthcare workers began serving this population. Surveying 153 U.S.-based healthcare professionals who work with persons with IDD, this study examined the presence, influence, and nature of their disability-related experiences. The most common and influential experiences involved pre- and post-professional disability training. Less frequent, albeit influential, experiences included being a sibling or having other family members with disabilities and working at disability-related camps. First encounters with persons with IDD occurred during the child and adolescent (i.e., preprofessional) years for 38% of respondents, with slightly lower percentages occurring earlier (34%, involving family) or later (28%, during pre- or post-professional training). Those with family or child–adolescent first encounters more often also reported disability experiences in subsequent periods. Respondents spoke of the formative effects of hands-on disability training as well as of family and child–adolescent experiences, although some disability-related careers also featured an element of chance. Practical and policy implications are discussed.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-05-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48696296","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}