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Copyright of American Journal on Intellectual & Developmental Disabilities is the property of American Association on Intellectual & Developmental Disabilities 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 abstract 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 abstract. (Copyright applies to all Abstracts.)

Significant advancements resulting from various legislative and grant initiatives have resulted in increases in higher education programs enrolling students with intellectual disability (ID). Information about program practices in admissions, academic access, employment, campus housing, and extracurricular activities was gathered via a national survey and offered to the public via a searchable directory. The current study provides a descriptive analysis of these survey data, addressing demographic structure and costs, as well as domains of practice including academic access, career development and employment, campus engagement, and credential attainment in higher education programs for students with ID from a sample of 257 programs. Comparisons to findings from a 2009 survey are offered when applicable and implications for practice, research, and policy are discussed. [ABSTRACT FROM AUTHOR]

This study explores the psychometric properties of Self-Determination Inventory: Student Report (SDI:SR) in students with intellectual and developmental disabilities (IDD) and without disabilities in China. The paper-and-pencil version of SDI:SR Chinese Translation (SDI:SR Chinese) was used to explore self-determination across students with IDD (n = 245) and students without disabilities (n = 315) from 16 schools across six cities in China. We examined the factor structure of the measure, conducted analysis of measurement invariance, and compared the latent means across students with IDD and without disabilities. Findings suggest that the data fit a one-factor model better than a three-factor model. We found greater variability in self-determination among students with IDD than students without disabilities. However, the two groups did not differ in latent means. [ABSTRACT FROM AUTHOR]

We examined the use of residential services for people with intellectual disabilities in Finland from a regional perspective. Our aims were to investigate how service supply and need, as well as municipal factors, impact the use of residential services and to analyze whether the available information in registers and databases can be effectively utilized in studies of this kind. According to the model based on the register data, after age adjustment the most important factors determining service use were service supply, the prevalence of intellectual disabilities, the municipality's level of urbanization, the number of persons granted long-term care as a percentage of all care recipients, and the percentage of middle-class and managerial households in a given municipality. [ABSTRACT FROM AUTHOR]

Copyright of American Journal on Intellectual & Developmental Disabilities is the property of American Association on Intellectual & Developmental Disabilities 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 abstract 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 abstract. (Copyright applies to all Abstracts.)

Previous research suggests that residence in non-metropolitan areas is associated with lower access to preventive care and poorer health. However, this research has been largely restricted to the general population, despite data demonstrating disparities in health status and access to healthcare services for people with intellectual and developmental disabilities (IDD). The current study examined several hypotheses involving the effects of rurality on access to preventive healthcare and services and health status: (1) individuals in non-metropolitan areas will have lower preventive healthcare utilization, (2) individuals in non-metropolitan areas will have poorer health outcomes, and (3) individuals in non-metropolitan areas will have poorer access to services. The current study uses data from the National Core Indicators (NCI) Adult Consumer Survey 2015-2016: Final Report which included Rural-Urban Commuting Area (RUCA) Codes for the first time. Results of logistic regression suggest that, despite connection to disability services, the health status and access to preventive healthcare services of people with IDD generally follow patterns similar to those observed in the general population. Namely, people with IDD in non-metropolitan areas have decreased access to healthcare services, preventive healthcare utilization, and health status. Despite some exceptions, it appears effects of rurality are not completely mitigated by current state and federal efforts. [ABSTRACT FROM AUTHOR]

In this article, we demonstrate the potential of machine learning approaches as inductive analytic tools for expanding our current evidence base for policy making and practice that affects people with intellectual and developmental disabilities (IDD). Using data from the National Core Indicators In-Person Survey (NCI-IPS), a nationally validated annual survey of more than 20,000 nationally representative people with IDD, we fit a series of classification tree and random forest models to predict individuals' employment status and day activity participation as a function of their responses to all other items on the 2017-2018 NCI-IPS. The most accurate model, a random forest classifier, predicted employment outcomes of adults with IDD with an accuracy of 89 percent on the testing sample, and 80 percent on the holdout sample. The most important variable in this prediction was whether or not community employment was a goal in this person's service plan. These results suggest the potential machine learning tools to examine other valued outcomes used in evidence-based policy making to support people with IDD. [ABSTRACT FROM AUTHOR]

Every child has the right to an education, including children with disabilities. Research findings from across the globe have shown the benefits of inclusive education, and mandates for providing accessible, inclusive education can be found in national policies and international agreements as well. This article explores the perspectives of 11 international experts on the state of inclusive education in countries spanning 5 continents. Experts participated in a focus group discussion at Inclusion International's 17th Annual World Congress 2018 in Birmingham, United Kingdom. Participants shared multifaceted factors impacting inclusive educational practices. Based on their experiences, participants also discussed strategies that were deemed effective or ineffective depending on varied contextual elements. Implications for policy, research, and practice are discussed. [ABSTRACT FROM AUTHOR]

Higher education programs for students with intellectual and developmental disabilities (IDD) offer opportunities to engage in college experiences including access to typical college courses. The purpose of the present study was to examine data from federally funded programs in order to describe and identify predictors of inclusive course enrollments. Data on 672 first-year students with IDD who enrolled in 3,233 inclusive college courses were analyzed. Significant predictors were the age of the student, whether the student attended a program that offered access to regular student advising or provided an official transcript, whether the student took any specialized courses, and whether the student had a paid job or participated in particular career development experiences. Implications for higher education programs are discussed. [ABSTRACT FROM AUTHOR]

The purpose of this study was to evaluate the effect of a multicomponent mathematics intervention (modified schema-based instruction, video anchors, and goal setting with self-graphing) on mathematical problem-solving skills of secondary students with intellectual and developmental disabilities. Three participants were taught to solve percent of change word problems, which involved calculating the discounted price of an item or activity after using a coupon and then determining whether they had enough money to make the purchase. Results of the multiple probe across participant design indicate a functional relation between the intervention and problem solving, and all participants were able to generalize skills from word problems to real-world stimuli (i.e., coupons, receipts, menus). Implications for practice and future research are discussed. [ABSTRACT FROM AUTHOR]

This qualitative study examined the beliefs and experiences of special education teachers about inclusive education for secondary age students with severe disabilities and co-existing complex health care needs. Participants were 11 middle and high school special education teachers who collectively case managed 18 students. Data were collected via demographic questionnaires and online interviews, and analyzed using an inductive coding approach. Findings portray the roles of personnel who provide student supports, the types of supports personnel and students require to be successful, benefits experienced by students, and barriers to including students. [ABSTRACT FROM AUTHOR]

Expertise among teachers of students with extensive support needs is not well understood, and beliefs about what constitutes quality education for this population vary widely. We discuss findings from prior research on teacher preparation in relation to high-leverage practices and expertise development for students with extensive support needs within the social contexts of schools. We identify four core practices of expert teachers for students with extensive support needs, and we theorize the progression from novice to expert for each core practice using Dreyfus's (2004) model of expertise. [ABSTRACT FROM AUTHOR]

Progress in including students with the most significant cognitive disabilities in general education environments has been unquestionably slow during the past quarter century. Systematic approaches to identifying and arranging supports are needed to accelerate this outcome. In this article, we propose an approach to understanding students by their support needs in relation to curricular demands, instructional strategies, and participation requirements as a means to enhance the capacities of schools and general education classrooms to educate all students. [ABSTRACT FROM AUTHOR]

This article describes a model that systems can use to build contexts that enhance human functioning and promote valued outcomes for individuals with intellectual disability (ID). Our premise is that that systems have a responsibility to build contexts that enhance human functioning and promote valued outcomes for people with ID, and that this obligation can be met through the use of contextual analysis to deliberately design and implement support strategies that are responsive to identified contextual factors. The model employs a 2-step process to identify context-based independent and intervening variables and align support strategies with identified context-based influencing factors, disability policy goals, and associated outcome domains. We propose a number of indicators that can be used to assess the quality of a system's responsiveness based on their implementation of the model. Implications for research and practice are discussed. [ABSTRACT FROM AUTHOR]

Research supports the use of psychological therapies among people with mild to moderate intellectual disability (ID). One barrier to people with ID accessing psychological treatments is the confidence of mental health practitioners. This article explores the confidence of Australian clinicians in providing therapy to people with ID. One hundred and fifty-two psychologists and counselors in Australia completed a survey exploring self-reported confidence when working with clients who have ID and mental health difficulties. Clinicians were most confident with generic counseling skills, but less confident with elements of assessments and interventions. The use of treatment protocols was endorsed as helpful particularly among those with low confidence. This highlights the need for dissemination of treatment guides and training to help increase clinician confidence. [ABSTRACT FROM AUTHOR]

Increased choice and control is a driving force of current disability policy in Australia for people with disability and their families. Yet little is known of how adults with intellectual disability (ID) actually experience choice and control within their family relationships. We used interpretative phenomenological analysis of individual, semistructured interviews conducted with 8 Australian adults with ID to understand the meaning given to their experience of family support received around choice and decision making. Three themes were identified: (1) centrality of family, (2) experience of self-determination, and (3) limitations to choice and control. The participants identified trusted family members from whom guidance around choice and decision making was both sought and received, often involving mutual decision making and limitations to control. [ABSTRACT FROM AUTHOR]

Restraint, restrictive interventions, and seclusion are hotly contested practices with inconclusive evidence of their effectiveness. Because the use of restraint and seclusion on people with intellectual and developmental disabilities (IDD) is controversial and its effectiveness doubtable, this study was conducted to explore if and how they were permitted in Medicaid HCBS 1915(c) waivers, the largest providers of long-term services and supports (LTSS) for people with IDD. To do so, 111 fiscal year 2015 IDD waivers from across the nation were examined to determine if and how states permitted restraint, restrictive interventions, and seclusion. Findings revealed an overwhelming majority of waivers permitted the use of restraint (78.4%) and restrictive interventions (75.7%). A smaller proportion (24.3%) allowed the use of seclusion. [ABSTRACT FROM AUTHOR]

In 2015, the AAIDD National Goals panel recommended the inclusion of the Universal Design for Learning (UDL) framework in services designed to support the needs of learners with intellectual and developmental disabilities (IDD). As a framework that can be implemented district/schoolwide, little is known about the implementation process and administrators' experiences with implementation. Less is known regarding the experiences of administrators' as they implement the framework with learners who struggle or have identified disabilities. To better understand these experiences in implementation, researchers conducted interviews with eighteen school principals/district personnel in a district recognized for fully implementing UDL. A subset of questions from these interviews focused specifically on efforts in implementation to include the needs of learners that are struggling or that have identified disabilities. This research analyzes responses from those administrators specific to supporting students with disabilities. Findings are shared, including those specific to the inclusion of individuals with IDD. Implications for future research and practice are provided. [ABSTRACT FROM AUTHOR]

This study examined the vocational outcomes achieved by 9,432 transition-age (17-26 years old) supported employees with intellectual disability served by state-federal vocational rehabilitation programs throughout the United States in 2015. It found that individuals who had completed at least some postsecondary education were more likely to be employed, work more hours, earn more per hour, and were employed in a greater range of vocations than individuals with all other levels of education examined (i.e., individual without high school diplomas, special education certificate of completion, or high school diploma). Further, individuals who had postsecondary education also were the most cost-effective and would be cost-efficient from the taxpayer's perspective after being employed 28.4 months. [ABSTRACT FROM AUTHOR]

Participant direction allows people with intellectual and developmental disabilities (IDD) and/or their families to direct services; in doing so, participant direction shifts participants from passive recipients to active consumers. Medicaid encourages, but does not require, states to allow participant direction. The aim of this study was to examine if and how states permitted participant direction in Medicaid HCBS 1915(c) waivers for people with IDD. We analyzed HCBS waivers from across the country to determine frequency of participant direction, expenditures directed toward participant direction, and states' goals for utilization of participant direction. Our findings revealed a disconnect between the large number of waivers that allowed participant direction, and states' extremely low goals for actual utilization of participant direction. [ABSTRACT FROM AUTHOR]

A speech is presented by Dr. Susan M. Havercamp, president of American Association on Intellectual and Developmental Disabilities. Topics discussed include maintenance of regional connections and leadership roles in the field of intellectual and developmental disabilities; promoting health and wellness among people with intellectual and developmental disabilities; and designing of social and environmental interventions for promoting the same.

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 familiar parents are with existing resources (e.g., programs, supports, trainings), what information they would consider most helpful, and how they would prefer to access resources. Our study examined the resource needs of 1,738 parents of children and adults with IDD in the state of Tennessee. Most parents reported limited familiarity with programs across every domain (e.g., residential, vocational, postsecondary). The extent to which parents indicated various types of information would be helpful varied by demographic factors (e.g., daughter or son's age, disability diagnosis, socioeconomic status), as did the avenues through which they indicated they were most likely to access information and resources. We offer recommendations aimed at equipping parents with relevant supports and resources to guide their son or daughter's journey across the lifespan. [ABSTRACT FROM AUTHOR]

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 child with intellectual disability generated themes on maternal appraisals of the child's disability, perceived stressors, and resources. Mothers seemed to utilize a combination of fact-based and religious explanation to make sense of their child's disability. Parental stressors ranged from child-related factors (diagnosis, behavioral problems) to financial and family-level challenges. However, participants also reported a number of personal, family-level, and societal resources that helped them cope with the stressors. Study findings are discussed in the context of implications for practice, policy, and research. [ABSTRACT FROM AUTHOR]

A scoping review of studies on physical activity and nutrition health promotion interventions for individuals with intellectual disabilities was conducted. Searches included MEDLINE, PsycINFO, and CINAHL databases from 1986 through July 2006. The final number included 11 articles comprising 12 studies. Generally, this review indicated some evidence for fitness and psychosocial benefits of community-based physical activity and exercise programs for adults with intellectual disabilities. When combined with a more comprehensive health behavior education program incorporating exercise and nutrition information, some evidence exists for reductions in weight. [ABSTRACT FROM AUTHOR]

Today's electronic technologies, including computers, cell phones, Internet, and electronic organizers, hold great promise for individuals with intellectual disabilities, yet little research has been conducted to explore patterns of use among this population. Drawing upon a survey of 83 adults with intellectual disabilities, we examined factors affecting use for three key electronic technologies: computer, Internet, and electronic organizers. Forty-one percent of participants used a computer; 25%, the Internet; and 11%, electronic organizers. Age, work setting, and self-perceived ability to manually copy information affected likelihood of use. Primary barriers reported by participants included lack of access, training and support, and expense of technologies. Interest in using such technologies was high, and participants offered suggestions for improved accessibility. [ABSTRACT FROM AUTHOR]

It is important to continuously support families to improve the lives of people with intellectual and developmental disabilities and their family members. Using a life course approach to address strengths and needs of families, a National Community of Practice, infused with the Charting the LifeCourse framework, focused on systems change to improve policy and practices to enhance the lives of families. A qualitative analysis used the Value Creation framework to evaluate both process and product outcomes of 16 state communities of practice as to changes in knowledge and practices. Results emphasize the relative effectiveness of aspects of policy and overarching practices designed to support people with disabilities and their families in participating states. [ABSTRACT FROM AUTHOR]

Continuity and security includes people with intellectual and developmental disabilities (IDD) not only having resources to meet their basic needs, but also includes the amount of change and disruption people have in their lives and the control they have over that change. We explored the impact of continuity and security on people with IDD's (n = 325) quality of life by analyzing Personal Outcome Measures interviews. Continuity and security not only significantly increased overall quality of life, but it also positively impacted two thirds of the different outcomes, ranging from health to relationships to rights. A stronger community infrastructure is needed to promote the continuity and security, and, by extension, quality of life of people with IDD. [ABSTRACT FROM AUTHOR]

This article summarizes research focusing on communication skills of people with intellectual and developmental disabilities (IDD) who communicate primarily without speech, sign language, or augmentative communication. Importantly, developmental theories were emphasized as useful for interpreting communication in children and adults. These studies led to research aimed at developing improved assessments and interventions for individuals with IDD, who may have a variety of diagnoses. Future research is needed to facilitate more widespread use of these tools by clinicians and researchers. [ABSTRACT FROM AUTHOR]

Calls to support inclusive educational experiences for students with intellectual and developmental disabilities (IDD) have been longstanding. General education STEM classes may provide a rich context for promoting the inclusion of these students within a relevant curricular area. To assess inclusive class participation, we directly observed 15 secondary students with IDD—along with a comparison group of their classmates without disabilities—in STEM-related classes. We focused on academic, social, and contextual measures. Although some similarities were found in the academic and social participation of students and their classmates, key differences were observed in the areas of what they learned, who they conversed with, and how they learned. We present recommendations for future research and practice aimed at strengthening inclusive educational experiences. [ABSTRACT FROM AUTHOR]

This study tests an empirically derived model for measuring personal opportunities for people with intellectual and developmental disabilities (IDD) using National Core Indicators In-Person Survey (NCI-IPS) state and national datasets. The four personal opportunities measured, (a) privacy rights, (b) everyday choice, (c) community participation, and (d) expanded friendships, were informed by existing conceptualizations of service as well as NCI-IPS measures. Analyses confirmed the fit of a four-factor model and demonstrated that factors were significantly and positively correlated. To demonstrate the relationships between personal opportunities and personal and environmental characteristics, we estimated a structural equation model that regressed personal opportunities on age, gender, place of residence, and level of intellectual disability. Implications for using personal opportunities for evaluating service quality of IDD systems are discussed. [ABSTRACT FROM AUTHOR]

We compared the inclusion-related attitudes of community agency staff in the United States and Israel. Samples of 147 (United States) and 74 (Israel) staff members were assessed with the Community Living Attitudes Scale (CLAS). Results showed that higher educational levels, regardless of nation, were associated with higher Empowerment scores, lower Exclusion scores, lower Sheltering scores, and higher Similarity scores. Empowerment attitudes were strongly related to differences in the agencies in which individuals were employed. Controlling for age, education, and agency, we found that staff in the United States had higher Empowerment scores than did Israeli staff. Israeli staff had higher Sheltering and Similarity scores and marginally higher Exclusion scores than did the United States staff. [ABSTRACT FROM AUTHOR]

Prior research indicates links between parents' experiences of interpersonal trauma and emotion-interpretation difficulties, and between such difficulties and child attachment insecurity and disorganization. Although mothers with mild levels of intellectual disability (ID) are at heightened risk for trauma and emotion-interpretation difficulties, and their children for attachment insecurity, corresponding links in this population have not been examined. We therefore investigated emotional interpretations among mothers with mild levels of ID (n = 23) and matched comparison mothers without ID (n = 25), in relation to mothers' experiences of trauma and their children's attachment representations. Mothers with mild levels of ID were not less accurate than comparison mothers with regard to general positive and negative emotion-interpretation accuracy, but they were significantly more likely to misinterpret shame and anger. Among mothers with mild levels of ID, misinterpretations of shame were positively related to maternal experiences of trauma, and to child attachment insecurity and disorganization. [ABSTRACT FROM AUTHOR]

We explored whether reports of three dyadic relationships (marital/partner, parent-child, sibling) were related to perceptions of family functioning in 467 mothers of children with intellectual disability aged 4-15 years. Structural equation models were fitted to examine associations between relationship indicators and family functioning. The final structural model showed that partner relationship satisfaction, partner disagreement, child-parent conflict, and sibling relationship warmth accounted for the most variance in family functioning, with partner relationship satisfaction having the strongest positive association. Dimensions of dyadic relationships appear to be associated with broader constructs of family functioning in this sample of mothers, signifying the potential for systemic intervention. [ABSTRACT FROM AUTHOR]

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 context of social capital. In-depth, semistructured interviews conducted with 16 family members and direct support staff of persons with ID who use Facebook revealed that most participants favored Facebook use by persons with ID for bonding and bridging social capital and for normalization. Most participants noted the empowering effect of online activity on persons with ID, yet some reported risks and usage difficulties. 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 FROM AUTHOR]

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 necessary for the participant direction of services. The purpose of this study was to examine Medicaid Home and Community Based Services (HCBS) 1915(c) waivers across the nation to determine how states were utilizing self-advocacy services for people with IDD. Findings revealed approximately half of waivers provided self-advocacy services; however, less than .01% of waiver spending was projected for stand-alone self-advocacy services. 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 FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities (ID) represent a small but important group of hospitalized patients who have higher rates of complications than do patients without ID hospitalized for the same reasons. Complications are potentially avoidable conditions, such as healthcare-acquired infections, healthcare-acquired skin breakdown, falls, and medication errors and reactions. Addressing factors related to complications can focus efforts to improve hospital care. The purpose of this exploratory study was to analyze data from reviews of academic medical center charts (N = 70) about complications and to examine patient and hospitalization characteristics in relation to complications among adult patients (age ⩾ 18 years) with ID hospitalized for nonpsychiatric reasons. Adults with ID tended to be twice as likely to have complications (χ2 = 2.893, df = 1, p = .09) if they had a surgical procedure and were nearly four times as likely to have complications (χ2 = 6.836, df = 1, p = .009) if they had multiple chronic health conditions (three of the following: history of cerebral palsy, autism spectrum symptoms, aggressive behavior, respiratory disorder, and admission through the emergency department). Findings suggest preliminary criteria for assessing risk for complications among hospitalized people with ID and the need for attention to their specific needs when hospitalized. [ABSTRACT FROM AUTHOR]

The variability in placement of students with autism and intellectual disability and lack of access to general education for these students suggests the need to identify factors associated with placement and then address the role of current policy. This article presents the results of a 5-year trend analysis of placement of students with autism and intellectual disability in California and the relationship between these trends in placement and district factors. Results suggest trends in increased access to general education environments for both groups of students and relationships between the probability of placement in general education settings and the percentage of students in the district who receive free or reduced-price meals. Implications for district and state leaders are discussed. [ABSTRACT FROM AUTHOR]

We propose a justice-based partnership between employees and family members as a means to create services and support systems for people with intellectual disability, enhancing quality of life indicators. More specifically, we examine the links from mutual intergroup justice to three outcomes reported by family members: satisfaction with the center, service quality delivered by employees, and performance focused on the quality of life of people with intellectual disability. We used data from 111 centers. In each center, a group of family members (n = 845) and a group of employees (n = 914) participated. Multilevel modeling revealed that mutual intergroup justice (between employees and family members) has a positive effect on satisfaction with the center, perceptions of functional and relational service quality, and performance based on quality of life. [ABSTRACT FROM AUTHOR]

Adults with intellectual and developmental disabilities (IDD) are at a greater risk of developing high cholesterol and cardiovascular disease. We examined whether physical inactivity, obesity, and diabetes were predictive of reported high cholesterol and whether there were any mediating effects of diabetes on the relationship between obesity and high cholesterol in 1,618 adults with IDD across five years. Results suggest that obesity and diabetes were significantly associated with high cholesterol after adjusting for age, sex, and residence type with a partial mediator effect of diabetes in the relationship between obesity and high cholesterol across all time points. Further research is needed to explore the causal mechanisms behind the relationships between obesity, diabetes, and high cholesterol. [ABSTRACT FROM AUTHOR]

Barriers to health care access can greatly affect one's health status. Research shows that U.S. adults with intellectual and developmental disabilities (IDD) have poor health and face barriers such as long waits for appointments. However, whether barriers differ by race and ethnicity has not been examined. We conducted a secondary data analysis using the 2002-2011 Medical Expenditure Panel Survey dataset, and compared perceived barriers of community-living U.S. adults with IDD in three racial and ethnic groups (White, Black, and Latinx). Specifically, we examined the top reasons for not having usual source of care, delaying or foregoing medical care. For Black and Latinx adults with IDD, the most-mentioned reasons for not having usual source of care, delaying or foregoing medical care were "don't like/don't trust doctors," "don't use doctors," and "don't know where to get care." In comparison, the White adults with IDD group's biggest perceived barriers were location and insurance related. All groups cited that being unable to afford care was a top reason for delaying or foregoing care. Policies/interventions to improve health care access in racial/ethnic minorities with IDD must first address the topic of developing trust between patients and the health professions. Insurance and the rising costs of care are also key areas that need attention. [ABSTRACT FROM AUTHOR]

Goal setting and attainment is often a targeted outcome in the intellectual and developmental disabilities field; however, standardizing the measurement of attainment of individualized goals is challenging. The purpose of this article is to introduce a four-domain framework that provides a series of questions to research and evaluation teams in planning for the use of goal attainment scaling (GAS) as an outcome measure at the individual or aggregate level. We intend to stimulate discussion and ongoing work to further systematize how GAS is used in (a) intervention research to establish evidence-based practices and (b) practice to assess the extent to which interventions and supports lead to intended outcomes. The goal is to promote a clear planning process to inform data collection on individualized goal attainment outcomes that are rooted in goals and outcomes valued by people with intellectual and developmental disabilities. [ABSTRACT FROM AUTHOR]

The United States long-term services and supports system is built on largely unpaid (informal) labor. There are a number of benefits to allowing family caregivers to serve as paid personal care providers including better health and satisfaction outcomes, expanded workforces, and cost effectiveness. The purpose of this study was to examine how Medicaid HCBS Section 1915(c) waivers for people with intellectual and developmental disabilities allocate personal care services to pay family caregivers. Our analysis revealed about two thirds of waivers in fiscal year (FY) 2014 allowed for family caregivers to potentially be paid for personal care services. This amounted to up to $2.71 billion of projected spending, which is slightly more than half of all personal care service expenditures in FY 2014. [ABSTRACT FROM AUTHOR]

This study examined perceptions of health and healthcare of people with intellectual and developmental disabilities (IDD) receiving Medicaid Managed Care. Exploratory, semistructured interviews were conducted with 23 participants. Findings indicate that participants generally expressed being in good health and defined good health as (a) absence of pain, disease, and symptoms; (b) adherence to or not requiring treatment; (c) physical self-care; (d) mental or spiritual self-care; and (e) ability to perform the activities one wants to do. Participants conceptualized healthcare as (a) ensuring needs are met through access to services, (b) obtaining quality services, (c) navigating the healthcare system successfully, and (d) receiving humanizing healthcare. This study has implications for improving healthcare and communications between people with IDD and healthcare providers. [ABSTRACT FROM AUTHOR]

A nuanced understanding of disparities impacting racialized people with intellectual and developmental disabilities (IDD) requires scholars employ research methods that make visible the structural factors that influence outcomes. Following the work of Tukufu Zuberi and Eduardo Bonilla-Silva, we explore race-based methodological considerations for disparities research with Black people with IDD. Specifically, we discuss (a) structural racism in research methods, employing disability critical race theory as a framework, (b) the absence of Black voices and Black scholarship, (c) the abstraction and misuse of race as a variable, and (d) mapping race as a point of discussion in the IDD discourse. Implications for research are discussed and recommendations for contextualizing race, ensuring equity in representation and dissemination, and amplifying the voices of Black scholars are provided. [ABSTRACT FROM AUTHOR]

Although a variety of health and wellness initiatives have emerged in the past decade, people with intellectual and developmental disabilities (IDD), their caregivers, and advocates still are facing remarkable challenges in staying healthy and receiving appropriate health services. The National Goals 2015 Conference provided a unique platform and an opportunity to summarize the current state of knowledge, identify national goals in research, practice, and policy, and set the stage for the future directions in health and wellness in IDD field. This article presents an outline to improve the health of people with IDD. The goals identify major health and wellness issues and solutions proposed by a group of disability researchers, policy specialists, advocates, health care providers, and service providers with the aim to set forth an agenda for national, state, and local action to improve the health of people with IDD and include them fully in appropriate health systems. [ABSTRACT FROM AUTHOR]

Across the United States, there is growing demand for a competent and stable workforce able to effectively support the health and community lives of individuals with intellectual and developmental disabilities (IDD) throughout the lifespan. This article describes national goals for research and innovation to advance the IDD workforce. The research goals outlined address important workforce topics that include increasing capacity and sustainability, competency development and quality support, the use of technology, family support, and the vital role of direct support professionals in helping people with IDD to become fully included and valued members of their communities. [ABSTRACT FROM AUTHOR]

People with intellectual and developmental disabilities (IDD) often rely on long-term services and supports (LTSS) to live and work in the community or with their families. As policy reforms continue, it is important that we have research goals to guide the field. In August 2015, an expert panel met to discuss the future of LTSS for people with IDD and reached consensus that future work should ensure adequate funding and quality standards are in place, especially with the growth of managed long-term services and supports (MLTSS) programs, the increasing variety of Medicaid funding authorities used to finance supports for people with IDD, the changes in public policy regarding LTSS, and the application of behavioral supports, particularly positive behavior support (PBS). [ABSTRACT FROM AUTHOR]

Studies of the general population indicate that social networks influence a person's employment situation and career, especially in regard to how a person finds and gets a good job. Recent studies suggest that networks may function in similar ways for people with certain disabilities. In order to learn about the role that social networks played in career development, in this study I explored the social networks of 5 young working people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Individuals with intellectual and developmental disabilities are living unprecedentedly longer lives primarily due to the long-term benefits of the deinstitutionalization movement and widespread improvements in health outcomes. However, the consequences of this protracted aging process are significant, complex, and often poor not only for the individuals and their caregivers but for the mainstream healthcare community. This article will explore, utilizing a constructionist perspective, how these challenges evolved from a nonissue to an impending crisis in less than 25 years. Additionally, present-day efforts by researchers, policymakers, and practitioners to address these challenges will be explored and recommendations will be made for future directions. [ABSTRACT FROM AUTHOR]