Showing papers in "Intellectual and Developmental Disabilities in 2017"
TL;DR: Different perspectives on and levels of evidence, commonly used evidence-gathering strategies, standards to evaluate evidence, the distinction between internal and external validity, and guidelines for establishing evidence-based practices are discussed.
Abstract: The purpose of this article is to move the field of intellectual and closely related developmental disabilities (IDD) towards a better understanding of evidence and evidence-based practices. To that end, we discuss (a) different perspectives on and levels of evidence, (b) commonly used evidence-gathering strategies, (c) standards to evaluate evidence, (d) the distinction between internal and external validity, and (e) guidelines for establishing evidence-based practices. We also describe how the conceptualization and use of evidence and evidence-based practices are changing to accommodate recent trends in the field.
43 citations
TL;DR: This review summarizes international research relating to the prevalence of dysphagia in people with intellectual disability using Medline, Cinahl, PsycINFO, Web of Science, email requests, and cross-citations to provide more precise prevalence estimates and clarify factors that may be associated with dysphagIA in this population.
Abstract: Dysphagia (feeding and swallowing disorder) is associated with serious health complications and psychosocial sequelae. This review summarizes international research relating to the prevalence of dysphagia in people with intellectual disability. Studies published from 1990 to July 2016 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests, and cross-citations. Twenty studies were identified. Dysphagia in people with intellectual disability appears to be associated with more severe levels of intellectual disability, comorbid cerebral palsy, and motor impairments. However, further research with representative samples of people with intellectual disability using adequate methods of assessment are required in order to provide more precise prevalence estimates and clarify factors that may be associated with dysphagia in this population.
36 citations
TL;DR: This study examined the resource needs of parents of children and adults with IDD in the state of Tennessee and offered recommendations aimed at equipping parents with relevant supports and resources to guide their son or daughter's journey across the lifespan.
Abstract: The importance of supporting families with members who have intellectual and developmental disabilities (IDD) is well-established in both policy and research. Yet little is known about how...
32 citations
TL;DR: The analysis revealed large discrepancies across states and services, and the services with the most funding were residential habilitation, supports to live in one's own home, and day haBilitation.
Abstract: Medicaid Home and Community Based Services (HCBS) 1915(c) waivers are the largest source of funding for the long term services and supports of people with intellectual and developmental di...
31 citations
TL;DR: An overview of the existing set of research studies on UDL application for students with ID in PreK-12 settings is presented and important questions for consideration are identified as the field seeks to determine how UDL guidelines can be applied to curriculum, used with evidence-based and effective practices, and used to support schoolwide initiatives inclusive ofStudents with ID.
Abstract: As an instructional design framework that can be used to design curriculum for students with and without disabilities, Universal Design for Learning (UDL) has the potential to support meaningful inclusion of students with intellectual disability (ID) in general educational settings. This article presents an overview of the existing set of research studies on UDL application for students with ID in PreK-12 settings. The current body of research illustrates that UDL is being applied to instructional activities for students with ID to examine a variety of interventions (e.g., adapted stories for individual students, inclusive general education curriculum) and outcomes (e.g., interaction, perceptions, knowledge gains) in self-contained and general educational settings. It also identifies important questions for consideration in future research as the field seeks to determine how UDL guidelines can be applied to curriculum, used with evidence-based and effective practices, and used to support schoolwide initiatives inclusive of students with ID.
29 citations
TL;DR: Analysis of interviews with urban Indian mothers of a 3-6 year old child with intellectual disability generated themes on maternal appraisals of the child's disability, perceived stressors, and resources, which indicated mothers seemed to utilize a combination of fact-based and religious explanation to make sense of their child's disabilities.
Abstract: We examined relevance of the key constructs of the stress and resilience framework in the urban Indian context. Analyses of interviews with urban Indian mothers (N = 47) of a 3–6 year old ...
27 citations
TL;DR: This study surveyed program coordinators at accredited universities to determine what is currently being done to prepare educators to implement a Universal Design for Learning (UDL) framework, the extent to which a UDL framework is being incorporated into preservice courses in higher education, and how a U DL framework isbeing used to improve postschool outcomes for youth with ID.
Abstract: Young adults with intellectual disability (ID) continue to experience the least successful postschool outcomes among transition-aged youth (Sanford et al., 2011). Experts disagree on the most effective approach to improve outcomes such as employment, postsecondary education, and community living. In 2015, the National Goals Conference brought together educational researchers to set an agenda to guide the field in terms of research, practice, and policy (Thoma, Cain, & Walther-Thomas, 2015). One of their recommendations, based on promising research and practices, urged the field to identify effective personnel preparation and professional development practices that ensure general and special educators can implement a UDL framework (Thoma, Cain, et al., 2015). This study surveyed program coordinators at accredited universities to determine what is currently being done to prepare educators to implement a Universal Design for Learning (UDL) framework, the extent to which a UDL framework is being inco...
26 citations
TL;DR: The current research in Universal Design for Learning for students with intellectual disability (ID) is briefly summarized and considered in light of the national goals presented by the American Association on Intellectual and Developmental Disabilities (AAIDD) in this article.
Abstract: The current research in Universal Design for Learning (UDL) for students with intellectual disability (ID) is briefly summarized and considered in light of the national goals presented by the American Association on Intellectual and Developmental Disabilities (AAIDD) in this article. Additionally, an action plan is provided for researchers and practitioners to extend knowledge on the implementation of the UDL framework inclusive of individuals with ID.
23 citations
TL;DR: The results showed that when comparing self-determination measures among disability classification groups, gender, disability label and race/ethnicity were associated with the effect size estimation, which empirically support the relevance of personal variables when understandingSelf-determination levels and their impact in the operational classification of ID.
Abstract: The relation between self-determination and intellectual functioning is complex, as other contextual factors may also play significant roles in explaining variability in self-determination...
19 citations
TL;DR: The administration and scoring of the Mullen Scales of Early Learning were adapted to eliminate the confounding effects of FM and EL impairments in assessing development and suggested that the MSEL-A and the MSel-ET could be viable measures for accurately assessing developmental domains in children with RTT.
Abstract: Rett Syndrome (RTT) is characterized by severe impairment in fine motor (FM) and expressive language (EL) function, making accurate evaluations of development difficult with standardized a...
19 citations
TL;DR: A framework that combines systems thinking and valued outcomes can be used by coalition partners across ecological systems to implement disability policy, promote the effective use of resources, incorporate specific support strategies that advance identified disability policy goals and lead to systemic changes and enhanced personal outcomes.
Abstract: This article provides a framework for an integrated approach to disability policy development, implementation, and evaluation. The article discusses how a framework that combines systems t...
TL;DR: Results indicate that age-relevant content, choice, and opportunities to socialize in online discussions were especially engaging for students, and further research is warranted to determine how UDL environments affect the literacy development of students with IDD.
Abstract: Universal Design for Learning (UDL) has been shown to have benefits for students with disabilities. However, little is known about its potential to support literacy for students with intellectual and developmental disabilities (IDD). This qualitative study explored (a) to what extent students with IDD are able to use Udio, an online UDL literacy environment; and (b) how students with IDD experienced and perceived Udio. A grounded theory approach was used to analyze classroom observations, as well as teacher and student interviews. Electronic usage logs and student-produced discussions and projects were analyzed descriptively. Students independently navigated the environment and used embedded supports, including audio-assisted reading and sentence starters. In addition, findings indicate that age-relevant content, choice, and opportunities to socialize in online discussions were especially engaging for students. Further research is warranted to determine how UDL environments affect the literacy development of students with IDD.
TL;DR: Four guidelines are discussed considered critical for successful policy implementation from a cross-cultural perspective to base policy implementation on a contextual analysis, employ a value-based approach, align the service delivery system both vertically and horizontally, and engage in a partnership in policy implementation.
Abstract: Implementation of disability policy is influenced by social, political, and cultural factors. Based on published work, this article discusses four guidelines considered critical for successful policy implementation from a cross-cultural perspective. These guidelines are to: (a) base policy implementation on a contextual analysis, (b) employ a value-based approach, (c) align the service delivery system both vertically and horizontally, and (d) engage in a partnership in policy implementation. Public policy should be understood from a systems perspective that includes cross-cultural issues, such as how different stakeholders are acting and the way they plan and implement policy.
TL;DR: A systematic approach to policy evaluation based on an evaluation framework and an evaluation process that combine the use of logic models and systems thinking is described.
Abstract: Policy evaluation focuses on the assessment of policy-related personal, family, and societal changes or benefits that follow as a result of the interventions, services, and supports provid...
TL;DR: A need for support services aimed at increasing opportunities for participating in physical and mentally stimulating leisure activity by middle-aged and older adults with Down syndrome should partner with primary caregivers in order to best foster participation in physical leisure activity.
Abstract: The present study examined leisure activity and its association with caregiver involvement (i.e., residence and time spent with primary caregiver) in 62 middle-aged and older adults with D...
TL;DR: The steps taken to develop such an assessment tool, the Supported Decision Making Inventory System (SDMIS), and initial feedback received from self-advocates with intellectual disability are described.
Abstract: Supported decision making has received increased attention as an alternative to guardianship and a means to enable people with intellectual and developmental disabilities to exercise their right to legal capacity. Assessments are needed that can used by people with disabilities and their systems of supports to identify and plan for needed supports to enable decision making. This article describes the steps taken to develop such an assessment tool, the Supported Decision Making Inventory System (SDMIS), and initial feedback received from self-advocates with intellectual disability. The three sections of the SDMIS (Supported Decision Making Personal Factors Inventory, Supported Decision Making Environmental Demands Inventory, and Decision Making Autonomy Inventory) are described and implications for future research, policy, and practice are discussed.
TL;DR: It is concluded that low bone mass is an extremely prevalent condition in adult patients with DS and their predisposing factors.
Abstract: Differences in bone mineral density (BMD) have been observed between adults with Down syndrome (DS) and the general population. The purpose of this article is to describe the prevalence of bone mass disorders in a cohort of adults with DS and their predisposing factors. We performed a cross-sectional study of 104 consecutively recruited adults with DS from an outpatient clinic of a tertiary care hospital in Madrid, Spain. We recorded epidemiological and anthropometric data, nutritional variables, coexisting clinical conditions, and laboratory variables. BMD was measured at the lumbar spine, total hip, and femoral neck using dual-energy X-ray absorptiometry. The prevalence of osteopenia ranged from 48% to 52%, and that of osteoporosis ranged from 19% to 22% depending on the site of measurement (femoral neck or lumbar spine, respectively). Age was the greatest risk factor associated for lower BMD, with similar bone mass accrual curve but with lower peak of BMD than the general population. We conclude that low bone mass is an extremely prevalent condition in adult patients with DS.
TL;DR: In this article, the authors examined reliability and validity of the revised scale (i.e., the FQoL Scale-21) and its scores for Taiwanese families of children and youth with intellectual disability and developmental delay (age 0-18).
Abstract: The Beach Center Family Quality of Life Scale is an internationally validated instrument for measuring family outcomes. To revise the scale for better alignment with the Family Quality of Life theory, the authors excluded non-outcome items in this revision. In this study, we examined reliability and validity of the revised scale (i.e., the FQoL Scale-21) and its scores for Taiwanese families of children and youth with intellectual disability and developmental delay (age 0–18). Results from 400 Taiwanese respondents suggested that the FQoL Scale-21 has the potential to be used as an indicator of positive outcomes in intervention evaluation, policy making, and service delivery.
TL;DR: A 12-step model that can be used for policy analysis that takes into account structural foundations of policy; addresses both legal formalism and legal realism; demonstrates contextual sensitivity; and addresses application issues and different conceptualizations of IDD.
Abstract: This article describes a 12-step model that can be used for policy analysis. The model encompasses policy development, implementation, and evaluation; takes into account structural foundat...
TL;DR: Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals and, accordingly, the facilitators and challenges in working with siblings are unclear.
Abstract: Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals. To date, though, it is unclear how professionals encourage sibling involvement and, accordingly, the facilitators and challenges in working with siblings. For this study, 290 professionals participated in a national web-based survey; participants answered three open-ended questions about ways to involve siblings, positive experiences with siblings, and challenges in working with siblings. Professionals reported person-level and systems-level supports to encourage sibling involvement. Also, professionals reported enjoying working with cohesive families of individuals with IDD and witnessing the benefits that siblings bring to their brothers and sisters with IDD. Challenges in working with siblings included: lack of sibling involvement, systemic barriers, and caregiving burden. Implications for future rese...
TL;DR: This study describes MLTSS implementation in Kansas for adults with IDD and identifies key aspects of the Centers for Medicare and Medicaid Services' newMLTSS regulations in the design and implementation of MLTSs programs.
Abstract: Many adults with intellectual and/or developmental disabilities (IDD) can access health and long-term services and supports (LTSS) through Medicaid. States are reforming their Medicaid LTSS programs from a fee-for-service model to a Medicaid managed LTSS (MLTSS) approach, anticipating improved quality of care and reduced costs, although there is limited evidence of MLTSS effectiveness. This study's objective was to contribute to the growing MLTSS research literature by describing MLTSS implementation in Kansas for adults with IDD. Thirty-one stakeholders completed in-depth semi-structured interviews, representing state or regional groups, service coordination providers, and family caregivers. Findings identify key aspects of the Centers for Medicare and Medicaid Services' new MLTSS regulations in the design and implementation of MLTSS programs.
TL;DR: Although Facebook use enhances the well-being of persons with ID, findings highlighted the participants' need for formal guidelines regarding social media best-practices for people with ID.
Abstract: This study aimed to understand and describe the views of family members and direct support staff regarding the use of Facebook by persons with intellectual disability (ID) within the conte...
TL;DR: This special issue is to help readers understand the complexities of disability policy and the factors that influence its successful development, implementation, and evaluation; and to encourage readers to expand their thinking and actions regarding the role they play in disability policy in a time of change.
Abstract: The enormous effects of public policy-both for good and for ill-in the lives of people with intellectual disability and related developmental disabilities demand the development of stronger tools for policy analysis, and more effective strategies for policy implementation and evaluation. The purpose of this special issue is to help readers understand the complexities of disability policy and the factors that influence its successful development, implementation, and evaluation; and to encourage readers to expand their thinking and actions regarding the role they play in disability policy in a time of change.
TL;DR: The impact on individuals seeking eligibility for developmental disability services when states rely on evolving diagnostic criteria for autism spectrum disorder is explored.
Abstract: When establishing eligibility for developmental disability (DD) services, definitions of specific diagnostic conditions, such as autism, impact policy. Under the Medicaid home and community-based waiver program, states have discretion in determining specific program or service eligibility criteria, the nature of supports to be provided, and the number of individuals to be served. Individuals with DD, their families, and advocates have pushed to expand eligibility and improve the quality of services and supports received. This article uses a California legal case to explore the impact on individuals seeking eligibility for DD services when states rely on evolving diagnostic criteria for autism spectrum disorder. Recommendations are made for a more equitable and consistent approach to disability eligibility determination.
TL;DR: Examination of language teachers used to discuss inclusion, Universal Design for Learning (UDL), and learners with intellectual disability is examined in an effort to better understand how teachers describe the relationship between those three.
Abstract: The purpose of this study was to examine the language teachers used to discuss inclusion, Universal Design for Learning (UDL), and learners with intellectual disability (ID) in an effort to better understand how teachers describe the relationship between those three. Utilizing a secondary analysis procedure, interview transcripts from seven general education teachers were reanalyzed to identify language used by teachers to refer to inclusive educational settings, the implementation of UDL, and learners with intellectual disability. The identified themes were then juxtaposed against the UDL framework (principles, guidelines, and checkpoints) and the current literature related to UDL and inclusive education. We end with recommendations for future practice and research involving inclusive classrooms, UDL, and learners with ID.
TL;DR: This paper examined the terminology used to define and report on dementia in publications related to intellectual disability (ID) and found that most articles related to ID and dementia reporting clinical or medical research generally provide a structured definition of dementia or related terms; social care articles tend toward term use without definition.
Abstract: A working group of the 2016 International Summit on Intellectual Disability and Dementia was charged to examine the terminology used to define and report on dementia in publications related to intellectual disability (ID). A review of related publications showed mixed uses of terms associated with dementia or causative diseases. As with dementia research in the non-ID population, language related to dementia in the ID field often lacks precision and could lead to a misunderstanding of the condition(s) under discussion, an increasingly crucial issue given the increased global attention dementia is receiving in that field. Most articles related to ID and dementia reporting clinical or medical research generally provide a structured definition of dementia or related terms; social care articles tend toward term use without definition. Toward terminology standardization within studies/reports on dementia and ID, the Summit recommended that a consistent approach is taken that ensures (a) growing famili...
TL;DR: A new theory-based measure of health-related quality of life for individuals with intellectual disability (ID) is developed, called the HRQOL-IDD, which contains 42 items and depicts a gradient of fluid-filled cups to represent frequency of experience of each item on a 5-point scale.
Abstract: Using principles of community-based participatory research we developed a new theory-based measure of health-related quality of life (HRQOL) for individuals with intellectual disability (ID). We recruited adults with ID (n = 129) to take part in interviews and review successive versions of HRQOL items. Critical input about content and understandability shaped the items, as did input from four focus groups of parents/caregivers (n = 16) and representative stakeholders from community-based agencies (n = 7). The resulting HRQOL measure, called the HRQOL-IDD, contains 42 items. The response format depicts a gradient of fluid-filled cups ("none" to "full") to represent frequency of experience of each item on a 5-point scale.
TL;DR: This article proposes the use of a dialectical model to address challenges raised by the relationship between two equally valid but often unequally considered approaches, namely, rights-based and person-centered.
Abstract: Protecting human rights has increasingly become a focus of regulation regarding individuals with Intellectual Disability (ID). While this focus on rights has succeeded in protecting people with ID from many of the most insidious abuses of the past, an over-emphasis on the human rights of people with ID while ignoring other aspects of their personalities and environments can create challenges. This article proposes the use of a dialectical model to address challenges raised by the relationship between two equally valid but often unequally considered approaches, namely, rights-based and person-centered. Suggestions are provided for using this model to meaningfully support individuals to reach their person-centered goals while continuing to recognize and address their individual rights, responsibilities, and challenges.
TL;DR: States need to expand the provision of self-advocacy services for people with IDD in order to strengthen their ability to direct their waiver services and exercise their rights.
Abstract: Self-advocacy plays an important role in facilitating the empowerment of people with intellectual and developmental disabilities (IDD), and helps people with IDD develop the skills necessa...
TL;DR: The processes used to develop, express, and evaluate the position statements are described; the policy content of several joint statements are summarized; and the role of these organization position statements is discussed.
Abstract: The American Association on Intellectual and Developmental Disabilities (AAIDD) and The Arc of the United States (The Arc) have a long history of joined efforts to develop, express, and evaluate disability policies. These efforts have resulted in a series of formal statements on critical issues such as education, healthcare, human rights, and criminal justice. Their joint efforts further important policy goals including providing clear strong communication about important policy values and directions, promulgating key principles of high quality supports and services, affirming best professional practices, and emphasizing personal outcomes. In addition, the joint efforts (a) affirm important aspects of organization identity; (b) enhance the organizations' abilities to assure the input of a wide variety of perspectives; (c) engage members' expanded ranges of experiences and talents; (d) multiply staff and leadership resources; (e) increase communication strength and avenues; and (f) establish proce...