Augmented Reality Enhanced Supported Employment for Individuals With Intellectual and Developmental Disabilities

Academy of Nutrition and Dietetics: Standards of Practice and Standards of Professional Performance for Registered Dietitians (Competent, Proficient, and Expert) in Intellectual and Developmental Disabilities

The concern that most people with intellectual and developmental disabilities (IDD) are "invisible" in health surveillance has been the focus of attention for at least two decades since the publication of the Surgeon General's Closing the Gap report (Office of the Surgeon General, 2002). Surveillance refers to systematic and repeated collection, analysis, and interpretation of health related data to inform planning, implementation, and evaluation of public health practices. This concern of "invisibility" has been exacerbated by recent changes in two U.S. surveillance systems, the National Health Interview Survey (NHIS) and the Survey of Income and Program Participation (SIPP) that no longer contain questions to allow monitoring of the health of this population. "From invisible to visible to valued"—this special issue is intended to increase knowledge of researchers, policy makers, program planners, and advocates on health surveillance of people with IDD, bringing forward directions to improve the health and well-being of this population.The invited papers in this issue present ongoing efforts in the U.S. that are informed by work from other countries to improve U.S. health surveillance that, in turn, can inform policy and programs for this population. In addition to the authors, we greatly value the reviewers who generously shared their diverse expertise in strengthening the papers. The reviewers include: Coleen Boyle (National Center on Birth Defects and Developmental Disabilities [NCBDDD]), Michael H. Fox (formerly with NCBDDD), Adriane Griffen (Association of University Centers on Disabilities), Jennifer Johnson (Administration for Community Living), Donald Lollar (University of Kentucky), Margaret Nygren (American Association on Intellectual and Developmental Disabilities), David O'Hara (Westchester Institute for Human Development), Karrie Shogren (University of Kansas), and Sue Swenson (Inclusion International). Their insightful reviews enhanced the knowledge communicated by each paper in this issue. As guest editors of this special issue, we discerned several important themes emphasized throughout the papers.Havercamp & Krahn (2019) summarize the current U.S. context, identifying three foundational issues for understanding the current data conundrum on health for this population. They note the dramatic increases in community living that came about through advocacy for greater autonomy, advances in knowledge, and changing societal views on disability. These changes were reflected and advanced through a sequence of legislation. There was no corresponding process, however, for monitoring the health of the increasing number of adults with IDD who were living in their communities. The authors review models of disability that have resulted in different approaches to measurement, notably those using identification by diagnoses vs. ones based on functional limitations. Finally, they raise the "denominator" issue, and the difficulties of understanding health of adults with IDD when data are based only on those receiving developmental disability services.Krahn (2019) calls for better data to inform federal agencies' policies and programs to improve health of people with IDD. In an era of data-driven decision-making, better data are essential for fiscal projections, planning, and evaluation of programs and policies. Despite this need, the recent development of standards for disability identification in national surveillance (U.S. Department of Health & Human Services [HHS], 2011) does not allow for the identification of people with IDD, making it impossible to ascertain data specific to the IDD population. Krahn (2019) introduces the sampling issue that plagues research in this field, differentiating the "served" from the "unserved" population, with estimates that only about one-fifth of adults with IDD are known to the developmental disabilities services system in their states. She concludes by calling for improved national health surveillance that utilizes different data types while continuously asking "who is missing from this sample?" and "what implications does that have?"Efforts to improve IDD health data have benefited from ongoing collaborations. Earlier work to promote improved data was highly collaborative across the Centers for Disease Control and Prevention (CDC) and the Administration on Intellectual and Developmental Disabilities (AIDD) at the HHS, and the then National Institute on Disability and Rehabilitation Research (NIDRR) at the U.S. Department of Education (ED) (see Fox, Bonardi & Krahn, 2015; Krahn, Fox, Campbell, Ramon, & Jesien, 2010). These collaborations have expanded recently to include other agencies within HHS, including the National Center for Health Statistics (NCHS) and the Centers for Medicare and Medicaid (CMS). Havercamp and colleagues (2019) summarize the work of a national collaborative work group hosted by the Administration for Community Living that included members across a number of HHS agencies, university researchers, and national advocates (Havercamp et al., 2019). Based on an established clinical definition for intellectual disability (ID), and the definition for developmental disabilities (DD) from the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act), the paper identifies priority constructs that need to be added to the National Health Interview Survey (NHIS) question set—specifically learning, independent living, and age at onset—to identify respondents with ID and DD. This core question set is intended to be a standard for use in other surveys.Havercamp and Krahn (2019) note the changing ways of looking at disability over time and the different definitions of "developmental disabilities" that are currently used. These differences are largely responsible for the variance in IDD prevalence rates reported in the literature (see Anderson, Larson, MapelLentz & Hall-Lande, 2019). Definitions differ along a number of important dimensions. First, whether the definition is based on diagnostic categories (e.g., cerebral palsy, ID, autism) or on functional limitation (e.g., limitations in mobility, thinking or remembering). A second distinction is severity level—whether the limitations are significant, or whether no mention is made of severity. Finally, the population and sampling frame determines who will have opportunity to be included in the sample and, correspondingly, to which populations the findings apply. Several papers recognize the differences between people "served" by the DD systems compared with those "unserved." Additional distinctions are beginning to be explored, such as, who is included and excluded from the Medicare system, the Medicaid systems, and private health insurer systems for interpreting findings. These definitional and sampling differences all contribute to different findings on prevalence and health status of adults with IDD.Operational definitions of ID and DD are an important consideration across the subsequent papers. Many of the authors wrestled with the differing definitions used by the programs or datasets they were drawing upon. This journal issue brings attention to these differences in operational definition without trying to bring them into a single, unifying definition. In 2003, Fujiura and Taylor noted this predicament of different operational definitions of ID and cautioned against striving for completely accurate measurement. The AAIDD definition of ID (Schalock, Borthwick-Duffy, Bradley, Buntinx, Coulter, Craig, Gomez, Lachappelle, Luckasson, Reeve, Shogren, Snell, Spreat, Tassé, Thomson, Verdugo-Alonso, Wehmeyer, & Yeager, 2010) is a commonly accepted clinical definition that requires deficits in intellectual functioning plus two areas of adaptive behavior that manifest during the developmental period. The DD Act defines DD as substantial functional limitations in at least three of seven major life activities. This results in a significant portion of people with ID not meeting criteria for DD as defined by the DD Act. Diagnostic approaches to define IDD, on the other hand, are categorical (e.g., cerebral palsy, Down syndrome, ID) and typically do not take severity of the condition into account. The state databases for DD services, Medicaid, and ID/DD registries use their own unique operational definitions to identify individuals with IDD.Havercamp and colleagues (2019) summarize the issues considered in recommending content domains for a standard set of survey items to identify adults with IDD in national surveys. They note that a significant challenge in measuring IDD is distinguishing the ability to learn or exhibit a skill from the opportunity to learn and exhibit that skill. This confounding of concepts is nowhere as present as in the inter-related concepts of "self-direction" and "self-determination."Bonardi and colleagues (2019) recognize the differences in definitions within and between states. They recommend greater consistency in how people with IDD are identified, calling on policy makers to promote greater consistency in definition that are informed by statutes applicable to all states (such as the DD Act). They further call on researchers to develop standardized methods for identifying people with IDD in large datasets, citing several recent examples of such methods.Balogh and colleagues (2019) describe examples from Canada and Australia in developing data linkage capacity across multiple administrative data sources as an ongoing resource in data rich environments. These methods allow researchers to extract data across databases while ensuring individuals' privacy. By establishing IDD identifiers, they are able to address a broad range of research questions about health of people with IDD through such data linkage systems. This approach has contributed to a better understanding of the prevalence of IDD, sociodemographic correlates of IDD, higher rates of chronic health conditions, much higher rates of hospitalizations for ambulatory care sensitive conditions, disparities in cancer screenings, and much higher rates of mental health conditions in both children and adults with IDD. Findings that emerge across the two countries include the higher prevalence rates from Australia where a birth registry is used, compared with data based on the served populations as occurs within the Manitoba and Ontario data linkage systems. Importantly, in both Canada and Australia, these findings are highly influential in policy and program planning. Both examples illustrate the importance of visionary leaders in establishing the data-linkage capability, observed growth and expansion over time, the need for ongoing support and funding, and the value of including persons with IDD in helping to realize the potential of data linkage.While health data for persons with IDD may be sparse, greater utilization of data that are currently available is needed. The relative dearth of information on health of persons with IDD will only be improved if health data are improved, and if there is expanded capacity among researchers to analyze data in ways that inform policy-makers to support data-informed decision-making. Current analytic expertise is concentrated among a relatively small group of researchers and centers. As interest and understanding of health determinants for people with IDD grows among policy makers, more extensive and more distributed analysis expertise is needed. For example, "super users" are analysts at the state or national level who can combine data sets across agencies and use sophisticated modeling techniques to determine how best to interpret the data.Additionally, tutorials or learning collaboratives on IDD data analyses, could support analysts to increase their own skills in a peer-learning format. For example, such a method implemented across the network of University Centers for Excellence in Developmental Disabilities (DD Act; P.L. 106–402; see https://www.aucd.org/template/index.cfm) could build interconnected capacity across the country.Health services research methods are beginning to be applied to administrative data for persons with IDD. Through a CDC-sponsored initiative, researchers are analyzing Medicaid data to gain insights into health of enrolled adults with IDD (e.g., McDermott et al., 2018; McDermott, Royer, Mann, & Armour, 2017). In this issue, Reichard, Haile, and Morris (2019) use Medicare data from enrollees who are dually eligible for Medicare and Medicaid. They document health conditions and health care utilization of Medicare Fee-for-Service beneficiaries with IDD identified through ICD 9/10 codes and compare them with beneficiaries without IDD for calendar year 2016. We believe this analysis of almost 31 million beneficiaries, with 1.56% having IDD, to be the first publication on this population through this data source. These data document substantially higher rates of having one (73%) or multiple (30.5% with 3 or more) chronic physical conditions for persons with IDD, aligning with previous survey research findings of greatly increased risk for select chronic conditions (Reichard & Stolzle, 2011; Dixon-Ibarra & Horner-Johnson, 2014). Current Medicare analyses indicate dramatically high rates of mental health conditions such as psychotic disorders (20.4%), major depressive affective disorder (28.9%), and anxiety disorder (31.5%). In concordance with analyses of Medicaid data (McDermott, et al., 2018), the authors note substantial variability across states in IDD diagnoses, likely reflecting differences in eligibility requirements for services and variability in recording of IDD codes across states and systems, raising questions of comparability and generalizability of findings across states. Undoubtedly, these issues will be explored in the near future as we anticipate increasing use of Medicaid and Medicare data sets to understand the health of the IDD population.Havercamp and colleagues (2019) and Krahn (2019) call for more attention to race/ethnicity and to data collection in the U.S. territories for a better estimate of national prevalence and more information on opportunities to promote health equity. Yet, efforts to understand how the health care barriers faced by people with disabilities are compounded by race or ethnicity have been slow to emerge and are not conducted routinely. A scoping review in 2014 found only 1 among 73 published studies where the researchers specifically framed the study design to examine barriers to health care access for people with disabilities who are also members of underserved racial or ethnic groups disability (Peterson-Besse, Walsh, Horner-Johnson, Goode, & Wheeler, 2014). Nine additional studies had other stated purposes, but included data on health care access barriers at the intersection of race/ethnicity. Recently, the National Academies of Sciences, Engineering and Medicine commissioned a paper to identify key issues in the compounding effects on health disparities at the intersection of disability and race and ethnicity (Yee et al., 2017).In their systematic review of 13 prevalence studies, Anderson and colleagues (2019) note that studies on children with IDD have disaggregated data by race, ethnicity, or other social factors; but no studies on prevalence of IDD in adults reported race and ethnicity data. Similarly, Bonardi and colleagues (2019) identified few administrative datasets that allowed disaggregation by race or ethnicity. Race and ethnicity are critically important in understanding health of persons with IDD as illustrated by Reichard and colleagues (2019) who found striking disparities across racial and ethnic groups. Wagner and colleagues (2019) remind us that innovative health promoting technologies are not equally available to groups marginalized by race, ethnicity or poverty (Wagner, Kim, & Tassé, 2019). The demographic characteristics of race and ethnicity need to be included in data collection and analyses as routinely as age and sex are now included.Collaborations across policy makers, advocates, and researchers have produced many of the advances in health surveillance of people with IDD—from the Surgeon General's report of 2002, to the initial CDC-led initiative (from 2009 to the present), to the current ACL-led summit and workgroups (from 2016-present).The two workgroup papers illustrate the value of close relationships for identifying the most pressing current problems and the possible directions for solutions. Havercamp and colleagues (2019) describe the thoughtful process for determining the core domains to assess in order to identify people with IDD in national surveys. Bonardi and colleagues (2019) highlight efforts to identify people with IDD in administrative databases across single states, territories, and multiple states, capturing rich information on health care and service utilization. They describe new developments in accessing Medicare data, and efforts to harmonize data sources available through the All Payer Claims Databases. Survey data such as the National Core Indicators and other state systems provide opportunities to build a richer picture of the health of people with IDD in each state or region.In glimpsing the future for IDD and health surveillance, Wagner and colleagues (2019) summarize some of the as-yet unrealized promises and the all-too-realized perils of electronic health records (EHR) in providing data aggregation across populations. Technology advances in other segments, like precision medicine, may promote greater inter-operability across EHR systems for persons with IDD. Their overview of wearable technologies and use of 'smart home' technologies indicates the possibility of technology monitoring that simultaneously increases personal autonomy while also promoting the health and safety of adults with IDD. These are especially promising directions given the current and predicted shortage of direct support staff.The papers in this special issue highlight the importance of improved health surveillance of people with IDD. In the two decades since the Surgeon General's call for better data (Office of the Surgeon General, 2002), we have learned a great deal about how to measure and what to measure to understand and improve the health of people with IDD. This slow but persistent progress is a testament to the leadership and collaboration across federal agencies, purposeful advocacy, and the ongoing support for targeted research undertaken by an expanding corps of committed and talented social scientists trained in the latest statistical and epidemiological methods and policy analysis. As guest editors of this special issue, we are grateful to the authors and reviewers who generously contributed their time and expertise. With them, we look forward to progress in the coming decades, that will result in people with IDD becoming fully visible and valued, their place in health data programs and policies universally recognized and secure.

Background. In July 2012 the Research and Training Center on Community Living at the University of Minnesota hosted a State-of-theScience Conference on Community Living Outcomes and Quality of Life (SOSC). The purpose of this conference was to bring together researchers and other stakeholders to provide a summary of what is known, identify points of debate and gaps, and establish recommendations for future research related to community living outcomes and quality of life in for people with intellectual and developmental disabilities (IDD). The conference had a number of focus areas, including: social inclusion; self-determination; family experiences, support and siblings; employment; health and wellness; methodological issues in research; quality of life indicators; outcome predictors; and using outcome data to inform policy. The State of the Science Conference was a vehicle through which these key topics related to community living and participation could be discussed and future research goals identified. This special issue of Intellectual and Developmental Disabilities (IDD) includes papers written by the presenters and participants of the SOSC on key topics associated with community living outcomes. The purpose of this introduction is to place the special issue papers in a broader research, policy and service-delivery context. The phrase ‘‘state-of-thescience’’ connotes rigorous, technical analysis of scientific knowledge using techniques such as systematic reviews and meta-analysis. These are valid approaches, but they require a level of research evidence and a consistency in outcomes measures that are rarely available in IDD research. As Moseley, Kleinert, Sheppard-Jones, and Hall (2013, this issue) note, public policy draws on the best available evidence, and often cannot wait for gold-standard randomized control design studies to be completed. Moreover, in many public policy areas, including IDD services, it is neither possible, nor ethical, to randomly assign people with IDD to treatment and non-treatment groups. Nature of the special issue papers. Instead of systematic reviews, this special issue presents a series of expert commentaries and narrative reviews that focus on important policy-related and conceptual issues that were examined at the State-of-theScience Conference. As Lakin (2012) noted, ‘‘In policy research it is often necessary to accept the preponderance of good evidence through comprehensive reviews of all the available credible evidence’’. Ideally, such reviews select the best available evidence and analyze and interpret it in a manner underpinned by a detailed understanding of the circumstances in which the evidence was obtained, and of the IDD policy and service-delivery context in which the conclusions are to be applied. We hope readers will find that the commentaries, reviews and analyses presented in this special issue display these characteristics. US focus drawing on US data. One feature of a number of the special-issue papers is a strong focus on outcomes, services, policy and research involving people with IDD in the US. A related characteristic is that many of these papers draw on data from one or more US national surveys, such as the Administration on Intellectual and Developmental Disabilities (AIDD) Projects of National Significance. These projects include the National Core Indicators project (Human Services Research Institute and the National Association of State Directors of Developmental Disability Services), Residential Information Systems Project (University of Minnesota), State of the States in Developmental Disabilities Project (University of Colorado, Boulder) and Access to Integrated Employment: National Data Collection on Day and Employment Services for Citizens with Developmental Disabilities (University of Massachusetts, Boston). However, the spotlight on the US is not all encompassing. For example, Amado, Stancliffe, McCarron and McCallion (2013, this issue) draw on national findings from Ireland arising from the Intellectual Disability Supplement to The Irish Longitudinal INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

A Man Named Peter: Living in Long-Term Care as a Younger Adult

Community Living and Participation: Embracing the Complexity and Forging Forward

A couple of years ago, Mike Wehmeyer set a new precedent by issuing the presidential address at the beginning of his term, rather than at the end. So, thank you Mike for establishing this tradition—I am sure that I will like it more in about 30 minutes—and thanks to all of you, who stayed to the end of the conference, for the opportunity to speak to you this afternoon to deliver my presidential address, Embracing Complexity: Community Inclusion, Participation, and Citizenship, and to serve your organization in a leadership role. It is such an honor to be here today among so many people that I consider esteemed colleagues and dear friends. I am certainly humbled by this opportunity and, frankly, a little intimidated to be speaking to a group of such distinguished leaders in the field of intellectual and developmental disabilities (IDD). My path to the American Association on Intellectual and Developmental Disabilities (AAIDD) was pretty simple. I was working for a provider organization and one of my colleagues came back from an AAIDD Minnesota meeting and mentioned planning the upcoming state conference. I told her that sounded interesting, and she invited me to the next meeting. I have been involved since that time and have always found AAIDD to be my professional home because of its multidisciplinary focus on IDD. My path to this organization should be a reminder to all of you that all it takes is a simple invitation and people respond and become engaged. I urge each of you to invite at least one of your colleagues or friends to join AAIDD. As a good steward of the role of incoming president of this organization and this task of putting together these thoughts, I did my homework. Thanks to Maggie Nygren’s help, I was able to read presidential speeches in every decade since this organization began. I started with 1894 and ended by reading every speech that I have listened to in the 20+ years I have been a member. My purpose for this task was to understand a bit of AAIDD history and to look for trends and themes that relate to the topic of my address, Embracing Complexity: Community Inclusion, Participation, and Citizenship. I can unequivocally report to you that this organization has been wrestling with these issues since its beginning; certainly in different time periods and contexts but, at the root, very similar issues. In preparing, I also consulted with living past presidents of the association to learn from them what they perceived as the most complex issues we face in the contemporary field. Now, I have to admit, part of this exercise was to validate that I was not way off base in the complexities I thought existed and planned to include in my address. To my surprise, nearly all of the living past presidents who responded to my request had remarkably similar ideas about the complexities we face, and, luckily for me, I was not way off base. Most importantly, as I prepared, I reflected on and consulted with the people with whom I have worked and learned from throughout my career who live with disabilities. Their voices and our shared experiences will certainly be heard throughout my remarks. Lastly, I consulted with the Merriam-Webster dictionary to ensure that I had a clear understanding of the words I selected for the conference theme. I was initially a bit overwhelmed and stunned at the amount of advertising that was occurring as I was consulting the online dictionary, and I was simultaneously fascinated by how this advertising changed depending on the word I was searching for. It is truly fascinating. This complex marketing was a lesson for me in the remarkable changes that have occurred in our culture since I have been a member of this association and a lesson in the power of marketing and advertising. However, as a quick reminder, or perhaps as a mini-lesson to you, here’s what Merriam-Webster had to say about the conference theme. INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

Toward 2025: Promoting Valued Outcomes for People With IDD Through National Goals 2015

Equity for People of Color With Intellectual and Developmental Disabilities

Small, geographically limited studies report that people with intellectual and developmental disabilities (IDD) have increased risk for serious pregnancy-related and birth-related challenges, including preeclampsia, preterm birth, and increased anxiety and depression, than their peers. United States-based population-level data among people with IDD are lacking. To identify perinatal and postpartum outcomes among a national, longitudinal sample of people with IDD enrolled in public health insurance, compare subgroups of people with IDD, and compare outcomes among people with IDD with those of peers without IDD. This retrospective cohort study used national Medicaid claims from January 1, 2008, to December 31, 2019, for 55 440 birthing people with IDD and a random sample of 438 557 birthing people without IDD. Medicaid funds almost half of all births and is the largest behavioral health insurer in the US, covering a robust array of services for people with IDD. Statistical analysis was performed from July 2023 to June 2024. People who had a documented birth in Medicaid during the study years. Perinatal outcomes were compared across groups using univariate and multivariate logistic regression. The probability of postpartum anxiety and depression was estimated using Kaplan-Meier and Cox proportional hazards regression. The study sample included 55 440 birthing people with IDD (including 41 854 with intellectual disabilities [ID] and 13 586 with autism; mean [SD] age at first delivery, 24.9 [6.7] years) and a random sample of 438 557 birthing people without IDD (mean [SD] age at first delivery, 26.4 [6.3] years). People with IDD were younger at first observed delivery, had a lower prevalence of live births (66.6% vs 76.7%), and higher rates of obstetric conditions (gestational diabetes, 10.3% vs 9.9%; gestational hypertension, 8.7% vs 6.1%; preeclampsia, 6.1% vs 4.4%) and co-occurring physical conditions (heart failure, 1.4% vs 0.4%; hyperlipidemia, 5.3% vs 1.7%; ischemic heart disease, 1.5% vs 0.4%; obesity, 16.3% vs 7.4%) and mental health conditions (anxiety disorders, 27.9% vs 6.5%; depressive disorders, 32.1% vs 7.5%; posttraumatic stress disorder, 9.5% vs 1.2%) than people without IDD. The probability of postpartum anxiety (adjusted hazard ratio [AHR], 3.2 [95% CI, 2.9-3.4]) and postpartum depression (AHR, 2.4 [95% CI, 2.3-2.6]) was significantly higher among autistic people compared with people with ID only and people without IDD. In this retrospective cohort study, people with IDD had a younger mean age at first delivery, had lower prevalence of live births, and had poor obstetric, mental health, and medical outcomes compared with people without IDD, pointing toward a need for clinician training and timely delivery of maternal health care. Results highlight needed reproductive health education, increasing clinician knowledge, and expanding Medicaid to ensure access to care for people with IDD.

This Addressing Healthcare Inequities in IDD special issue advances current thinking and research to increase our understanding of health inequities and approaches to improve health care for people with intellectual and developmental disabilities (IDD). In this introduction, we briefly describe health and healthcare inequities for children and adults with IDD, arguing that the quest to improve healthcare quality must include an intentional pursuit of equity. Two articles follow that analyze existing data by factors including diagnosis and other characteristics to explore healthcare disparities. The final three studies explore approaches to advance trainee and clinician competencies to provide quality care to patients with IDD. The inclusion of Dr. Karrie A. Shogren's American Association on Intellectual and Developmental Disabilities (AAIDD) 2022 Presidential Address extends the discussion with a robust reflection on systemic barriers and offers a vision for equity and inclusion that has implications for health care as an aspect of every good life.In 2001, a seminal report published by the Institute of Medicine's Committee on Quality of Healthcare in America Project, "Crossing the Quality Chasm," provided clear evidence of gaps in the quality of healthcare and catalyzed the establishment and growth of quality improvement efforts across the complex systems of healthcare. "The Triple Aim," developed and described by Berwick and colleagues (2008), offered guidance to move towards enhancing patient experience, reducing cost, and optimizing population health. As systems have engaged with this and other quality improvement frameworks, significant disparities based on race, ethnicity, income, and disability status have become increasingly apparent. For example, people with IDD experience inequities in health and health care (Havercamp & Scott, 2015; Krahn & Fox, 2014). People with IDD have high rates of chronic health conditions, yet poorer access to health care compared to people without disabilities (Reichard et al., 2011). They report barriers to accessing health care, high rates of unmet health care needs, and dissatisfaction with the health care they receive compared to people without disabilities (Ali et al., 2013; Doherty et al., 2020; Prokup et al., 2017; World Health Organization [WHO], 2011). Disability-related health inequities are compounded when people with IDD have other marginalized identities, such as those based on race, ethnicity, sexual orientation, gender identity, poverty, or rural place of living (Courtney-Long et al., 2017; Dembo et al., 2022; Magaña et al., 2016). Inequities in health outcomes are understood to result, in part, from differences in social circumstances (e.g., discrimination, poverty) that affect health (Angelelli et al., 2022; Krahn et al., 2006), disparities in healthcare access (Lauer et al., 2021), and inequities in data collection and failure to monitor their health (e.g., Havercamp & Krahn, 2019; Fox et al., 2015; WHO, 2021). The global COVID-19 pandemic dramatically illustrates that the burden of infectious disease falls most heavily on those populations already disadvantaged by systemic discrimination and oppression, including people with IDD (Ruprecht et al., 2021; Turk et al., 2020).The pursuit of healthcare equity for patients with IDD depends on health system research that identifies people with IDD in the data as well as other marginalized identities, where possible. The next two articles in this special issue leverage existing health services data to explore healthcare disparities. Acosta and colleagues used the Nationwide Emergency Data Sample (NEDS) to compare the rates of emergency department visits leading to hospital admission and reasons for hospital admission as a function of intellectual disability (ID) diagnosis, age group, and other characteristics. In the third article, McMaughan and colleagues present the results of a cross-sectional analysis of the 2016 Kids' Inpatient Database to discover the most frequent principal diagnoses for inpatient stays among children and youth with autism, the costs associated with these hospitalizations, and the length of hospital stays. Understanding these factors is needed to advocate for and develop appropriate community-based support services to reduce the burden of hospitalizations and to inform the development of value-based care models. Taken together, these articles demonstrate opportunities to use existing health service datasets to identify disparate healthcare utilization patterns and outcomes in people with IDD."The Quadruple Aim" introduced the quality priorities of clinician work-life and experience in 2014 (Bodenheimer & Sinsky, 2014). Healthcare professionals hold negative and ableist attitudes and beliefs about disability and report feeling uncomfortable and unprepared to meet the health needs of patients with disabilities (Desroches et al., 2019; Iezzoni et al., 2021). Without explicit disability training, health care providers are likely to view disability as a negative health outcome and to hold low expectations for the function and quality of life of individuals with disabilities. Training can prepare clinicians to communicate effectively and provide accessible, patient-centered assessment and treatment to patients with disabilities. In 2022, the National Council on Disability released a policy brief, Health Equity Framework for People with Disabilities, calling for comprehensive disability clinical-care curricula and disability competency education in all U.S. medical, nursing, and other healthcare professional schools (National Council on Disability, 2022).The next three articles in this special issue have direct implications for health care delivery for people with IDD, emphasizing the critical role of training and experience of clinicians. Recognizing the relationship between feeling prepared to care for a patient and positive patient experience, the Golub-Victor team explored perceived self-confidence to care for adults with ID among students in interprofessional healthcare training programs. This study explored the influence of several factors on trainee's self-confidence. Program-related characteristics such as the number of years in the program, healthcare discipline, and individual characteristics such as gender identity, and prior experience or training in ID are described. In the fifth article, Sheppard and colleagues describe an innovative school-clinic partnership where medical students spent a day with a special education faculty member observing children with disabilities in school settings. This pilot study explored the feasibility of implementing this experiential learning activity during a pediatric clerkship and, similar to Golub-Victor and colleagues, students' perceived competence. In the sixth article, Berens and colleagues explore the feasibility, acceptability, and impact of a behavioral intervention to reduce the need for sedation, general anesthesia, and restraint in dental care for adults with IDD.In the final article, taken from her 2022 AAIDD Presidential Address, Shogren likens ableism to racism and sexism in the harm it causes people with disabilities and its insidious nature. She calls on us to 1) recognize and name systemic barriers including ableism, and 2) take action to break down these barriers to advance equity.As editors of this special issue, we have learned much from the contributing authors and are appreciative of readers who will use these findings to improve health care for children and adults with IDD. We hope this special issue inspires readers to seek opportunities to identify and dismantle barriers to equity in health and health care for people with IDD.

Preventive Oral Health Services

The Importance of Elements of Inclusive Education

Supporting Students With Intellectual and Developmental Disability in Postsecondary Education Andrew Scheef (bio), Aleksandra Hollingshead (bio), and Brenda Barrio (bio) Following a sustained increase in the number of inclusive educational experiences in K–12 settings (U.S. Department of Education, 2019), higher education institutions (HEIs) are offering opportunities for students with intellectual and developmental disability (IDD) to engage in inclusive postsecondary education (IPSE; Think College, 2019). Although many students with mild disabilities (e.g., learning disabilities or ADHD) are able to succeed in college with disability support services, these supports are not enough for individuals with IDD. As a result, IPSE opportunities may be available to students with any number of conditions that make traditional entrance requirements unattainable (e.g., Down Syndrome, Autism Spectrum Disorder). Postsecondary education opportunities for students with IDD can be traced back to the 1970s (Neubert, Grigal, Moon, & Redd, 2001) and are currently offered at more than 270 HEIs (Think College, 2019). The reauthorization of the Higher Education Opportunity Act (HEOA, 2008) provided the foundation for significant growth of IPSE. Most notably, the HEOA outlined a process by which schools offering postsecondary education opportunities for students with IDD can obtain a comprehensive transition program status, which makes students eligible for need-based federal financial aid (with the exception of student loans). Through this and other provisions, the HEOA has provided increased credibility and legitimacy to IPSE. Among multiple examples of high-quality IPSE opportunities in the US, some of the larger and more established exist at Clemson University (ClemsonLIFE), University of Iowa (UI REACH), Syracuse University (InclusiveU) and Vanderbilt University (Next Steps). Some IPSE offerings provide services that are substantially separate from the courses and services accessed by those students not accessing disability support services; these include specialized programs that are designed for and offered only to students with IDD (Hart, Mele-McCarthy, Pasternack, Zimbrich, & Parker, 2004). Such courses may focus on skill development in areas of need commonly associated with individuals with IDD (e.g., independent living, social skills, vocational skills, self-determination). Although these programs may initially appear to be an effective way to support students with IDD in HEI settings, the lack of engagement with peers without disabilities limits the extent to which these offerings are actually inclusive. Thus, there is an increased emphasis on providing opportunities for students with IDD to enroll [End Page 528] in the same courses as their peers (Grigal, Hart, & Weir, 2011; HEOA, 2008). With this in mind, the purpose of this article is to provide recommendations for HEI staff and faculty to increase course accessibility for students with IDD. BENEFITS OF INCLUSIVE POSTSECONDARY EDUCATION For higher education institutions, IPSE offers an additional opportunity to develop a diverse student body (Izzo & Shuman, 2013). Experiences with diverse individuals are especially important for young adults, because they are in the process of developing self-identity and an understanding of the world (Gurin, Dey, Hurtado, & Gurin, 2002). Although many HEIs may not include disability as a dimension of diversity (Scheef, Caniglia, & Barrio, 2020), a student body that represents a cross-section of the population should include students with IDD. Faculty generally have favorable attitudes toward IPSE, and these may increase after leading a classroom that includes students with IDD (Plotner & Marshall, 2015). Faculty who lead inclusive courses may experience a multitude of benefits, including an increased sense of job satisfaction and a more positive classroom climate (O'Connor, Kubiak, Espiner, & O'Brien, 2012). Students with IDD who engage in inclusive opportunities reap many benefits, including, but not limited to, improved independent living skills, social skills, community access, self-advocacy skills, and employability (Grigal, Hart, Smith, Papay, & Domin, 2018). Uditsky and Hughson (2012) frame IPSE as a moral imperative rooted in social justice; it offers students with IDD the same traditional college experience opportunities as their peers without IDD. Students without IDD who attend postsecondary education institutions that support IPSE are more likely to accept their peers with IDD and to benefit from the experience (e.g., increased comfort with people with disabilities, enhanced self-esteem, greater awareness of career interests; Izzo & Shuman, 2013; May, 2012). RECOMMENDATIONS FOR PRACTICE Following are recommendations for course instructors who are leading classrooms that include students...

CONTEXT: People with intellectual and developmental disabilities (IDD) are a vulnerable and growing population. Research on substance use disorder (SUD) among people with IDD is limited, and there are gaps in knowledge for areas such as prevention and treatment of SUD for people with IDD. The extant literature suggests that people with IDD are less likely to use substances overall compared to people without a disability; however, they tend to be more susceptible to SUD if they do use substances. OBJECTIVE: to better understand the relationship between IDD and SUD, and identify the best practices to improve adherence to treatment and improve health outcomes in this high-risk group STUDY DESIGN: Narrative review SETTING OR DATASET: review of the literature using the following databases: CINAHL, Pubmed, Scopus, Web of Science, Academic Search Complete, and PsychINFO POPULATION STUDIED: English peer-reviewed sources published between January 1, 2000–December 31, 2020 OUTCOME MEASURES: co-occurrence of SUD and IDD, risk factors common to IDD and SUD, treatment options for adults with SUD and IDD, and barriers to receiving or adhering to treatment for adults with IDD. RESULTS: Generally, the prevalence of substance use among adults with IDD appears to be lower than adults without IDD. However, research suggests that people with IDD who do use substances are at elevated risk of developing a SUD. Individuals with IDD and SUD are most commonly encountered in outpatient mental health settings. Cannabis, alcohol, and cocaine use disorders are the most frequent substances used by people with IDD. Risk factors for SUD among individuals with IDD include being male, having a family history of SUD, being exposed to peers who use substances, having psychiatric comorbidities, and having mild/borderline IDD. Estimates of co-occurring psychiatric disorders for those with IDD and SUD range from 42% to 54%. Treatment staff who provide SUD are not trained to work with clients with IDD. CONCLUSION: Factors that would improve outcomes for individuals with IDD and SUD include evidence-based training for treatment providers as well as individualized care that accounts for risk factors, co-morbid mental health diagnoses, and substance used. The lack of a shared universal language may impede the understanding and dissemination of research and reporting for people with IDD.

Adults with intellectual and developmental disabilities (IDDs) experience eating, drinking and swallowing problems, such as chewing problems, choking, gagging, coughing during eating, aspiration and rumination syndrome, which may lead to poor nutritional status. This study aimed to determine the relationship between IDD levels, eating, drinking and swallowing problems and nutritional status in adults with IDDs. The sample consisted of 71 participants (37 men and 34 women) with a mean age of 22.5±7years (range 18-60years). Professionals classified intellectual disability as mild, moderate or severe. The Screening Tool of Feeding Problems scale was applied to the caregivers of adults with IDDs to identify eating, drinking and swallowing problems. Dietary intake was assessed using a 24-h dietary recall and a food and nutrition photograph catalogue. The researchers measured body weight, height and middle upper arm circumference. Body mass index was calculated. Four body mass index categories were determined: underweight (<18.5kg/m2 ), normal weight (18.5-24.9kg/m2 ), overweight (25.0-29.9kg/m2 ) and obese (≥30kg/m2 ). Chi-squared tests were used to detect the relationship between IDD levels and eating and drinking problems, and analysis of variance tests were conducted to detect the relationship between IDD levels with anthropometric measurements and dietary intake. Participants had mild (42.3%; n=30), moderate (29.6%; n=21) or severe IDD (28.2%; n=20). They were underweight (12.7%; n=9), normal weight (59.2%; n=42) or overweight and/or obese (28.2%; n=20). Participants with severe IDD had significantly higher Screening Tool of Feeding Problems 'nutrition-related behaviour' and 'eating and drinking skill deficit problem' sub-scale scores than those with mild IDD. However, the groups had no significant difference in 'food refusal and selectivity' sub-scale scores. Participants with severe IDD also had anorexia prevalence similar to those with mild IDD. The groups did not significantly differ in anthropometric measurements, daily energy intake and macronutrient and micronutrient intake. While adults with severe IDD had more eating and drinking skill deficits (e.g. chewing problems and independent eating difficulties) and nutrition-related behaviour problems than those with mild IDD, the eating, drinking and swallowing problems, which may critically affect their food intake, were similar to adults with mild IDD. The anthropometric measurements and energy and nutrient intakes of adults with severe IDD were not significantly different from those with mild IDD consistently. Findings indicate that nutritional deficiencies and nutritional behaviour problems may be avoidable in adults with IDDs.