Are dental policies in Australia inclusive of children with intellectual and developmental disabilities in the state of Victoria? A grey literature review.

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.

On behalf of the Conference Planning Committee, it is my sincere pleasure to welcome you to the "Queen City," Charlotte, North Carolina, and the American Association on Intellectual and Developmental Disabilities (AAIDD) 136th Annual Meeting. The theme of this year's conference is research, practice, policy—and there's no better setting for such a conference than the Carolinas! This year's AAIDD annual conference promises to be a forum where researchers, clinicians, practitioners, educators, policymakers, and advocates will be able to share cutting-edge research, effective practices, and valuable information on important policy initiatives.I want to start my presidential address by thanking all the attendees for joining us for the AAIDD 136th Annual Meeting. This conference could not be the success it is without your presence and participation. I also want to thank all our colleagues from across the United States and the world who traveled to Charlotte to present their work and share their ideas and findings with us. I'll come back to this point in a minute. I would be remise if I did not acknowledge the important contribution to the success of this meeting of all those who provided their time and wisdom on the Conference Planning Committee and the Local Arrangements Committee as well as the large group of volunteers, and of course none of this could happen without the diligent work of the AAIDD staff and Dr. Maggie Nygren, AAIDD executive director and CEO. Please join me in thanking all these individuals in making this annual meeting the success that it is.This year's annual meeting was preceded by a series of exciting and stimulating preconference workshops on topics ranging from findings from the AAIDD Cuba Delegation, the National Task Group on Dementia, DirectCourse's Comprehensive Competency-Based Training Approach, Supports Intensity Scale and Individual Support Planning, and Ethical Issues for Psychologists.We opened our conference with a blue-ribbon plenary panel on research, practice, and policy in the area of autism spectrum disorders. We heard three fantastic presentations from Drs. Joe Piven (University of North Carolina), Connie Kasari (University of California–Los Angeles), and Susan L. Parish (Brandeis University). The opening plenary was an excellent example of the richness and importance of research, intervention, and policy issues and their interplay in the area of autism spectrum disorders. Our other panel presentation had a distinguished group of federal partners, including Drs. Melissa Parisi (Eunice Kennedy Shriver National Institute of Child Health and Human Development; NICHD), Gloria Krahn (National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention; NCBDD CDC), and George Jesien (Association of University Centers on Disabilities). This illustrious federal panel discussed the importance and role played by these agencies in supporting research and practice as well as the importance of policy matters in continued funding of these programs in the area of intellectual and developmental disabilities.Our biggest challenge this year in organizing the conference was reviewing and evaluating the great number of high-quality proposals submitted. We received almost 300 proposal submissions from across the United States and more than a dozen countries around the world. The conference was rich with 24 break-out panel presentations on topics including aging, health, employment, quality of life, transition, cross-cultural issues, end-of-life, forensic, supports, direct support workforce, inclusion, systems change, self-advocacy, spirituality, parenting, funding issues, and postsecondary education. In addition to these rich break-out sessions, we had more than 150 stimulating poster presentations from students, recent graduates, early careers professionals, established professionals, and researchers from around the world.Today and tomorrow, our conference wraps with a series of postconference workshops that will offer continuing education units on a variety of topics, including writing for publication, lessons learned from states using the Supports Intensity Scale, assessment of intellectual disability in capital cases, religion and spirituality, positive behavior supports, trauma-informed care, and dysphagia. These workshops offer some very practical hands-on training from highly respected and skills practitioners. I trust many of you will be taking advantage of these workshops before heading home.This year's conference theme was selected to highlight and remind us of the importance of interdisciplinary and interprofessional collaboration for the field of intellectual and developmental disabilities. Our field has had many accomplishments in research, intervention, and policy that have had significant impacts on improving the lives and outcome for persons with intellectual and developmental disabilities (IDD) and their families.Many years ago, a Norwegian physician by the name of Dr. Asbjorn Folling discovered that a group of individuals with intellectual disability had particular characteristics, and this led to his discovery that these individuals all had inherited a recessive gene that resulted in their bodies' inability to break down an amino acid called phenylalanine. The condition, called phenylketonuria (PKU), if undetected, would result in a build-up of phenylalanine to toxic levels in the individual's central nervous system, resulting in severe cognitive impairments. A relatively simple treatment consisting of a strict diet that eliminates all foods high in protein, which are rich in phenylananine, eliminated the devastating effects of PKU on infant brain development. Infant screening for PKU commenced as early as the 1960s, resulting in the identification and treatment of PKU and thus preventing thousands of children from developing intellectual disability.We should also not forget that the benefits yielded from the work done in our field reach beyond persons with IDD.Another important area of work stimulated by a practitioner in the field of intellectual disability is early childhood education. This was Dr. Maria Montessori, an Italian physician who worked with young children with intellectual disability. Maria Montessori had been influenced by the work of a couple of giants in the field of intellectual disability, including Jean Itard and Edouard Séguin. The Montessori Method stresses the development of initiative and self-reliance by permitting children to do by themselves the things that interest them—self-paced learning under the guidance of a teacher. Montessori's work led to significant gains in learning in children previously thought to have little potential because of their intellectual disability. The Montessori Method demonstrated that this structured learning method and environment can have important beneficial results in children with cognitive delays but also in typically developing children. Today, Maria Montessori's educational approach is used around the world and has become a highly coveted educational strategy used with children of all intellectual abilities.A final example of the richness of the work done in our field is in the area of applied behavior analysis and positive behavior supports. The science of using principles of behavior analysis to understand the function of behavior to promote learning and behavior change has been a critical part of intervention strategies in the field of intellectual and developmental disabilities for decades. We have used the science of applied behavior analysis and, more recently, positive behavior supports to teach new skills, promote pro-social behavior, and understand and reduce problem behavior. These approaches have been instrumental in our field of early intervention to promote inclusion, supported employment, and supported living, to name a few examples. These techniques are being used in all realms of daily life, including and increasingly with people without special needs. More and more preschool programs and school districts have adopted positive behavior support strategies to promote pro-social behaviors and the prevention of all forms of less desirable behaviors such as bullying, disrespectful behavior, aggression, and so forth.So we can see how research and practitioners play key interactive roles in promoting improved research and intervention for persons with IDD. And, at times, these methods also have applications for everyone. Public policy and legislation also play a key role in research and intervention for people with IDD. We, at times, did not appreciate the important role research and intervention findings play in crafting and influencing policies. Their interrelatedness cannot and should not be understated. I want to name but a few important policies that have played a key role in promoting services, programs, and research for persons with IDD. Early in the 1960s the Kennedy administration created important legislation now called the Developmental Disabilities and Bill of Rights Act (DD Act). The DD Act led to the creation of the University Centers for Excellence in Developmental Disabilities, DD planning Councils, and Protection and Advocacy Agencies in every state. During this same period we saw policy work that led to the creation of the National Institute on Child and Human Development (NICHD), which has been an important source of research funding for the field of intellectual and developmental disabilities, including the IDD research centers. Other important legislation for our field has included the Individual with Disabilities Education Act (IDEA), Combating Autism Act, and also Rose's Law. Rose's Law is an interesting piece of legislation but important because it resulted in the removal of stigmatizing language such as "mental retardation" from federal laws, replacing it with "intellectual disability." This aforementioned list is far from comprehensive. We have had a century of ground-breaking policy changes that have illustrated the work between policymakers, stakeholders, practitioners, and researchers. I selected these to make a point—not to identify them as more important than others not mentioned. Suffice it to say, policy, practice, and research are intertwined and interdependent, perhaps more than many really appreciate or admit.Founded in 1876, the American Association on Intellectual and Developmental Disabilities is the oldest professional association concerned with intellectual and developmental disabilities. I am truly honored to have the privilege to serve as president for 2012–2013. We have a great group of board members, a dedicated staff, and a very dynamic executive director/CEO. Despite these difficult economic times, our association is in good financial health. An exciting characteristic of our association that strikes me as indicative of the strength of our membership and leadership is the products that we continue to develop and deliver to the field. The credit for all this is a shared one. It is shared among our board members, our executive director/CEO, the staff in the national office, and especially you! All of our key products (e.g., the terminology and classification manual and user's guide, Positive Behavior Supports Training Curriculum, Supports Intensity Scale, annual meeting—yes, I include this as one of our key products—Good Blood, Bad Blood, online courses, and webinars) are largely the result of the hard work and brain power of our members.I have three basic priorities that I have set for my presidency. Following are my priorities—not necessarily in order of importance.The major functions of AAIDD are to:There are several factors that establish AAIDD as the best place for cutting-edge research, tools, and materials that inform IDD policy and practice. AAIDD has a long history in publishing some of the field's best journals, including Intellectual and Developmental Disabilities as one of the field's leading practice journals and the American Journal on Intellectual and Developmental Disabilities as the oldest and more respected research journal. This is the professional home for thousands of interdisciplinary practitioners, researchers, and leaders within the field of intellectual and developmental disabilities. Whether mentioned in legislation, the U.S. Supreme Court, or among stakeholders, families, or colleagues, AAIDD is seen as the authoritative organization on matters related to IDD. We must keep our focus on evidence-based and data-driven product development and ensure that we, as an organization, continue to deliver high-quality tools and materials that are needed to advance the quality of supports, services, and knowledge.Our association can only sustain its leadership through succession planning and grooming the next generation of educators, researchers, leaders, policymakers, practitioners, and so forth. We must make every effort to include students and early career professionals on our association task forces, committees, and work groups. The vitality of our association can only be ensured by the inclusion of senior leaders and more junior rising stars among our membership. This is a win–win proposal that will benefit all and promote high-quality work and outcome.I am committed to continuing the great work of the last several AAIDD presidents in supporting the students and early career professionals who have recently formed their own special interest group. Below are some suggestions of ways you and I can support AAIDD students or early career professionals:Please e-mail me any suggestions or ideas you have to increase the participation and meaningful involvement of students and early career professionals in our association life and annual meetings.This priority is to make certain that we educate and guide the American Psychiatric Association (APA) as it continues its work in crafting the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Of particular concern is that the DSM-5 revisions of the condition formerly called "mental retardation" currently include APA's proposal to rename the condition "intellectual developmental disorder." As you know, there is a national consensus in the United States, including federal legislation, to replace "mental retardation" with "intellectual disability."In addition to proposing a radically different terminology that lacks all support from the field of intellectual disability, the current version of the DSM-5 diagnostic criteria are the following: (a) significant deficits in intellectual functioning–profile of cognitive abilities; (b) significant deficits in adaptive behavior including daily life, communication, social participation, functioning at school and work, personal independence at home and in community where these limitations result in a need for ongoing support at school, work, or independent life; and (c) that these significant deficits originate during the developmental period.The adoption of a different terminology and the proposed DSM-5 diagnostic criteria are fraught with the potential to harm people with intellectual disability and their families. In a June 14 letter to the APA and the DSM-5 Neurodevelopmental Disorders work group cochairs, AAIDD wrote a detailed letter expressing our concerns and making clear suggested changes. AAIDD's concern regarding the DSM-5 proposal to adopt "intellectual developmental disorder" is that it is regressive and divergent with the currently accepted terminology of "intellectual disability." We have in the United States legislation called Rose's Law that was signed by President Obama that has replaced "mental retardation" with "intellectual disability" in federal law. All professional and disability organizations have adopted "intellectual disability." The DSM-5 adopting a different terminology will lead to confusion, inconsistency, and will hurt people with intellectual disability and their families. Adopting a different terminology, accepted by no one else, could affect federal and state determination of eligibility for benefits and services in schools, social security insurance, Home and Community Based Services (HCBS) waivers, as well as research communication and evaluations in the forensic arena, including capital cases.Other concerns include that the lack of an operational definition of the age of onset could potentially lead to different determinations of the age cutoff across states or even between state agencies. We also suggested the APA make more systematic their definition of adaptive behavior as being represented by conceptual, practical, and social skills. Finally, we cautioned the DSM-5 against deemphasizing individualized standardized testing in favor of clinical assessment and recommended APA strengthen the language regarding measurement error.I want to draw your attention to this important matter and encourage you to familiarize yourself with the AAIDD concerns with the DSM-5 proposal. We also applaud our colleagues in other national and international organizations who have endorsed the AAIDD position, including The Arc [of the United States], Special Olympics International, Inclusion International, American Psychological Association–Division 33, and American Academy of Developmental Medicine and Dentistry. We expect other groups to continue adopting our letter as a model in communicating their concerns to the DSM-5 work group. We should all be extremely concerned about the current direction being taken by the DSM-5.In closing my presidential address, I want to thank you again for joining us in Charlotte for the 136th AAIDD Annual Meeting and for choosing to be a member of AAIDD. I hope to see many of you next year in Pittsburgh, Pennsylvania. Do not hesitate to contact me should you have any questions, concerns, suggestions, and ideas how we can further advance the mission of our association, and let me know how you can become involved in strengthening AAIDD! Thank you.My thanks to the Conference Planning Committee: Lynn Ahlgrim-Delzell, Giulia Balboni, Britt Butler, Melissa DiSipio, Celia Feinstein, Judith Gross, Aaron Kaat, Yves Lachapelle, Laura Lee McIntyre, Loui Lord Nelson, Maggie Nygren, Joanna Pierson, Holly Riddle, Geronimo Robinson, David Rotholz, Peter Smith, Jim Thompson, and Miguel Verdugo; and the Local Arrangements Committee: Lynn Alhgrim-Delzell (co-chair), Holly Riddle (co-chair), Barbara Agnello, Greg Best, Kelly Bohlander, Davan Cloninger, Barton Cutter, Jody Deacon, Kira Fisher, Monica Foster, Melissa Hudson, Kelly Kazukauskas, Angela Lee, Judy Lewis, Mike Mayer, Andrea Misenheimer, Lauren Mullis Borchert, Greg Olley, Scott Paul, Pat Porter, Genny Pugh, Rod Realon, Ron Reeve, David Rotholz, and Deborah Whitfield.

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

Equity for People of Color With Intellectual and Developmental Disabilities

Fertility rates in women with intellectual and developmental disabilities in Wisconsin Medicaid

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.

Women with intellectual and developmental disabilities (IDD) face increased risk of adverse maternal pregnancy outcomes, yet less is known about infant outcomes. To examine birth outcomes of infants born to mothers with IDD and assess associations with demographics and IDD-type. We used data from the Big Data for Little Kids project, which links Wisconsin birth records to Medicaid claims for live births covered by Medicaid from 2007 to 2016. We identified IDD using maternal prepregnancy Medicaid claims and ran Poisson regression (with a log link function) with robust variance clustered by mother to compare prevalence of outcomes between singleton births with and without mothers with IDD. We adjusted the associations for demographic factors and estimated prevalence ratios (PR) as the effect measure. We assessed outcomes by IDD-type (intellectual disability, genetic conditions, cerebral palsy, and autism spectrum disorder) to explore differences by categories of IDD. Of 267,395 infants, 1696 (0.6%) had mothers with IDD. A greater percentage of infants with mothers with IDD were born preterm (12.8% vs 7.8%; PR 1.64, 95% confidence interval [CI] 1.42, 1.89), small for gestational age (8.5% vs 5.4%; PR 1.42, 95% CI 1.25, 1.61), and died within 12months of birth (3.2% vs 0.7%; PR 4.93, 95% CI 3.73, 6.43) compared to infants of mothers without IDD. Prevalence ratios were robust to adjustment for demographics factors. Estimates did not meaningfully differ when comparing different IDD-types. A greater porportion of infants born to mothers with IDD who were covered by Medicaid had poor outcomes compared to other infants. Prevalence of poor infant outcomes was greater for mothers with IDD even after accounting for demographic differences. It is imperative to understand why infants of mothers with IDD are at greater risk so interventions and management can be developed.

Impact of intellectual and developmental disability on quality-of-life priorities in adults with epilepsy

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.

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

Preventive Oral Health Services

Individuals with intellectual and developmental disabilities (IDD) face profound inequities in accessing and receiving quality mental health care despite being at increased risk for psychological distress. This paper examines the historical and systemic barriers that perpetuate these disparities—including financial limitations, imbalances within the healthcare system, provider shortages, inadequate research funding, and persistent misconceptions about the therapeutic potential of individuals with IDD. The exclusion of individuals with IDD from research and psychotherapy further exacerbates these challenges, creating significant gaps in clinical knowledge and guidance. In addition, individuals with IDD face disproportionately severe mental health challenges, including heightened exposure to trauma, diagnostic overshadowing, and the impact of social stigma. In response, inclusive strategies are proposed to improve care by addressing the unique cognitive, communicative, and emotional needs of this population. Central to these recommendations is a shift toward person-centered, dignity-affirming care that recognizes individuals with IDD as autonomous participants in their own treatment. To advance equity in mental health care, it is imperative to pursue transformative change through inclusive research, targeted provider training, and evidence-based therapeutic adaptations. By amplifying the voices of individuals with IDD and addressing the systemic factors that have long excluded them, it will be possible to move toward a more equitable and responsive mental health care system for this underserved community. Keywords: intellectual and developmental disabilities (IDD), mental health disparities, diagnostic overshadowing, person-centered therapy, trauma-informed care, inclusive psychotherapy, disability advocacy

BackgroundIndividuals with intellectual and developmental disabilities (IDD) face significant health disparities, often exacerbated by ethical and legal complexities in nursing care. Nurses are frequently challenged to balance autonomy, informed consent, patient safety, and human rights, especially in settings with unclear guidelines or insufficient training. This narrative review explores the ethical and legal considerations in nursing care for individuals with IDD, aiming to highlight challenges and propose best practices.MethodsA narrative review methodology was employed to synthesise evidence from qualitative, quantitative, mixed-methods studies, theoretical articles, and grey literature. A comprehensive search was conducted across PubMed, EBSCO, Embase, Scopus, and Web of Science, using keywords related to ethical issues, legal rights, nursing, and intellectual disability. Studies were included if they addressed the ethical or legal dimensions of nursing care for people with IDD. Data were synthesised narratively and visually mapped using conceptual mapping techniques. Quality was assessed using the SANRA scale.ResultsEighteen studies met the inclusion criteria. The findings reveal ethical tensions in obtaining informed consent, maintaining autonomy, and ensuring dignity against communication barriers and behavioural challenges. Nurses reported experiencing an emotional burden and ethical uncertainty when institutional constraints limit person-centred care. The overuse of restrictive practices and limited access to tailored healthcare were recurrent concerns. Legal challenges included complexities in guardianship, consent to treatment, and discriminatory practices. Emerging issues, such as the ethical use of artificial intelligence in care planning, were also noted.ConclusionNursing care for individuals with IDD requires ethically grounded, legally informed, and person-centred approaches. Best practices include accessible communication, interdisciplinary collaboration, tailored education, and advocacy. Nurses must receive support through training and organisational frameworks to navigate complex ethical decisions and uphold the dignity and rights of individuals with IDD. These findings have direct implications for nursing practice and policy, offering actionable guidance to improve ethical decision-making, communication, and inclusive care delivery for individuals with intellectual disabilities.

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.