Understanding Local Barriers to Inclusion for Individuals With Intellectual and Developmental Disabilities Through an Employment Conference

The goal of this communication is to provide clinicians and behavioral scientists with a scoping perspective on the diverse array of impacts of the COVID-19 pandemic on individuals with intellectual and developmental disabilities (IDD) in the U.S. It is our hope that this will stimulate subsequent scientific and advocacy efforts to ameliorate the disproportionate burden of the pandemic on people with IDD.We begin with the assertion that among non-infected persons in the U.S. few are more adversely affected by COVID-19 than individuals with IDD, given that a vast proportion require in-person care or critical therapeutic support within their living environments, with little back-up or systematic coverage for prolonged interruption of services.Many have temporarily lost access to trained caregivers or community service providers, and now face evolving threats to the return of baseline service, given uncertainties in State and agency budgets.Therefore, a first priority relates to restoration of in-person support services or comparable alternatives.There have been emerging guidelines on the safe care and support of individuals with IDD during the COVID pandemic-see Supplementary Table (ST) 1 which lists resources and documentation of early success of such strategies, however guidance is still evolving, has not permeated all reaches of the community where the information is desperately needed, and is not always presented in ways that can be fully comprehended by those with IDD.It must be

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.

Editorial: Introduction to Special Section on Evidence-Based Practices for Persons With Intellectual and Developmental Disabilities

The first plenary session of 132nd Annual Meeting of the American Association on Intellectual and Developmental Disabilities (AAIDD) reflected its support for basic and applied research to prevent or minimize the effects of conditions causing developmental disabilities, with Dr. Alan Guttmacher (2008), currently the acting director of the National Human Genome Research Institute, discussing the realized and potential benefits of genomics research on health and quality of life. This presentation dealt with an incredibly complex topic with clarity and sensitivity, and it was carefully neutral in tone and content with respect to intellectual and developmental disabilities. Nevertheless, a major implication regarding disabilities in general and developmental disabilities more specifically was quite clear. Current research in genomics, as well as in many other areas, is intended to improve understanding of the fundamental causes of disability to reduce risk, thereby lowering incidence of impairments and minimizing their severity. Should these goals be realized, the proportion of the population with disability would decrease, perhaps dramatically, and in some distant future significant impairments might even be eliminated altogether. As unachievable as that ultimate goal might appear to be, an assumption supporting many of the programs and much of the research agenda in the field of developmental disabilities is that we, as a society and as individuals, would be better off if physical, mental, and cognitive impairments ceased to exist.Yet, prevention encompasses many things and can be viewed from many perspectives, some of which have continued to challenge the universality of this assumption. There is a need for serious and open discussion of the many aspects of prevention within our field (and the disabilities field more generally) that entails explicit consideration of risks and benefits of specific programs and approaches to implementation. Although important distinctions can and should be made among primary prevention (avoiding the occurrence of a causal condition), secondary prevention (avoiding or minimizing the consequences of a causal condition after it occurs), and tertiary prevention (minimizing or improving outcomes after the consequences of a causal condition are evident), this dialogue needs to begin with consideration of the overarching goal of lowering the incidence and prevalence of impairments and reducing disability.In many respects, prevention was embraced long ago as a valued societal benefit, and this has had significant impacts in the case of intellectual and developmental disabilities. Certainly, the history of prevention in our own field has included some policies and actions that had devastating consequences for people with intellectual and developmental disabilities, and careful and constant vigilance will always be required to ensure that the rights, privileges, and dignity of every individual are respected and preserved. Nevertheless, many other aspects of the past continue to be broadly viewed as enormously beneficial, and several examples seem particularly illustrative.Until the late 19th century, congenital hypothyroidism (cretinism) caused many individuals in western Europe to have intellectual disability. For some alpine regions, it was so common an occurrence that local physicians thought it unremarkable (Merke, 1984). We now know that this condition is caused by dietary iodine deficiency, and this discovery, along with the availability of iodized salt, has virtually eliminated it as a public health concern in industrialized countries. (Nevertheless, congenital hypothyroidism remains one of the most common preventable causes of intellectual impairment in many underdeveloped regions of the world; Jain, Agarwal, Deorari, & Paul, 2008.)Prior to the 1950s, babies born with phenylketonuria (PKU), a relatively rare genetic disorder, were unimpaired at birth but invariably developed severe intellectual disabilities. This was caused by their inability to metabolize phenylalanine, a nutrient present in many everyday foods (including breast milk). Over time, the build up of abnormally high levels of phenylalanine has neurotoxic effects (Jervis, 1939), and, thanks to this discovery, a highly specialized diet was developed that has been successfully preventing disability in affected babies ever since. (All newborns in the United States are currently screened for PKU plus a growing number of other conditions, providing the basis for early diagnosis and prevention.)In the 1960s, a vaccine was developed with the intention of eradicating rubella (German measles), largely because infants exposed in utero were at high risk for intellectual and developmental disabilities. This vaccine has reduced the incidence of congenital rubella syndrome from 20,000 cases during the epidemic of the 1960s to less than 25 annually in the United States (U.S. Centers for Disease Control and Prevention, 2005). Current programs to reduce alcohol consumption by pregnant women are strongly endorsed and broadly supported for much the same reason, in this case to prevent fetal alcohol syndrome and related disorders, as is the use of folate supplements during pregnancy to reduce the incidence of neural tube defects (Pitkin, 2007). Obstetric practices have improved to avoid brain injury due to perinatal hypoxia and mechanical injury, as well as transmission of maternal viral infections that might affect babies' development. Environmental exposure to lead and mercury is being reduced to avoid their potentially neurotoxic effects, and the list could go on.Although these examples might suggest that there is no down side to prevention, the lessons of history show otherwise. Eugenics movements have gained momentum periodically, and there will always be some people in favor of imposing their views on those they see as less worthy than themselves. We are fortunate that we live in relatively enlightened times, but no matter how enthusiastic supporters of prevention may be, they must always be mindful of potential abuses. Furthermore, it must be emphasized that one of the most pressing issues facing our field has been conspicuously avoided in these examples: elective pregnancy termination based on the results of prenatal screening and diagnosis. Consideration of this critically important subject, along with the negative biases of many clinicians toward developmental disability (see Bauer, 2008), must be a major part of any dialogue about prevention. Even leaving this issue of life and death aside, though, an outspoken segment of our community vehemently opposes prevention. As expressed by the final comment from the audience at Guttmacher's (2008) plenary presentation identifying "the elephant in the room," some among us would "not want to live" in a world without intellectual and developmental disabilities. The commitment of this gentleman and his like-minded colleagues is beyond question, as is their regard for individuals with disabilities. However, other people share this commitment yet endorse the concept of prevention (although not necessarily all the strategies for possible implementation). The real elephant in the room, then, seems to be the question of whether a high regard for individuals with developmental disability inherently conflicts with support for prevention of the impairments affecting those very same people. There are certainly many ways to explore the answer to this question, but all of them should consider the logical connection between the two values in apparent opposition.Capturing the essential spirit of why people with intellectual and developmental disabilities should be valued as highly as people without disability, begin by accepting that (a) every person should have the same basic human rights and be recognized as an autonomous and unique individual and (b) each of us is capable of contributing in important ways to the diversity that enriches the human experience. In addition, accept that for every individual, each with his or her own unique profile of strengths and weaknesses, maturation and development depend critically on growth and change throughout the lifespan. Achievement of individualized successful development involves complex interactions among nature and nurture (and good fortune, no doubt), but specifics are unimportant for this discussion. It is only important to recognize that change is a natural part of life that incorporates growth, learning, and maturation and that individual characteristics must be viewed as dynamic rather than static.Once this is accepted, impairments, when present, should be recognized as just one type of personal characteristic among many, and, having no special status, impairments should also be viewed as dynamic and changeable. All treatments are based explicitly or implicitly on this premise, which is the driving force behind a host of programs that include access to a full and appropriate public education for all children (e.g., Public Law 94–142) and virtually all habilitation, education, and training. Shifting back to prevention, if impairments are subject to change, including reduction in severity, the logical foundation for opposing avoidance of their occurrence in the first place seems to collapse.As Guttmacher (2008) emphasized by the title of his plenary talk, "We Are All Mutants…," each of us is imperfect and vulnerable in one way or another. Any one of us can cross that threshold of impairment at any time, and in promoting acceptance of diversity and the value of people with disabilities, advocates serve all members of our society. Particularly at this juncture, when amazing advances in biomedical sciences and engineering are having dramatic impacts on practice and policy, it seems more important than ever to engage in an explicit evaluation of prevention and treatment from the diverse perspectives that make up the field of intellectual and developmental disabilities. A consensus is needed before the risks and benefits of specific policies, positions, and actions can be evaluated, and although that consensus might already exist outside of a small but vocal antiprevention minority, it seems at least as likely that core beliefs about prevention and treatment vary substantially. The stakes are enormous, and it would be incredibly useful to know the reality of current thinking.We each need to determine where we stand as part of the process of either building that consensus or determining that it can not be reached, and the process could start with each of us posing fundamental questions to ourselves and to others, such as: If impairments do not devalue individuals, why would successful treatment of those very same impairments? Does it follow that if successful treatment would not devalue these individuals, then prevention of impairments in others would not? Would we treasure our children with intellectual and developmental disabilities as much without their cognitive impairments? If we ever discover how to cure intellectual disability, should treatment be universally available? Has virtual eradication of congenital hypothyroidism in industrialized countries been beneficial, or have we tragically lost an entire class of people? Perhaps the most fundamental question of all is: What would we really think of a world where people without sight could see, where people unable to stand could run, and where people with intellectual disability were without their "significant limitations both in intellectual function and adaptive behavior" (American Association on Mental Retardation, 2002, p. 1)?Support was provided by Grant P30 HD024061 (M. Cataldo, Principal Investigator) from the Intellectual and Developmental Disabilities Branch of the Eunice Kennedy Shriver National Institute of Child Health and Human Development. I thank Drs. Michael Guralnick, Steven F. Warren, and Warren Zigman for many thoughtful comments on an earlier draft of this article.

This article describes the use of in-house funding, private contracts, and a mixture of the two for applications in public transit operations. Three transit agencies are presented as examples: SunLine Transit (Thousand Palms, California), Foothill Transit (Los Angeles County), and Phoenix Public Transport (Phoenix, Arizona). Private contracts are often less expensive due to cost-savings measures on the part of the private entity. One such example involves paying employees less money on an hourly wage than is possible within a public organization. In addition, organizations avoid paying for outsourced Social Security, Medical, unemployment, and workers' compensation for these contracts. Lastly, private contracts cut down on slow bureaucratic processes that hinder public organization. However, using in-house employees has advantages such as greater control over quality of service. In the case of a combined public and private operation, the author notes that, due to the potential for maximized efficiency, cost per ride rates are among the lowest for peers. Likewise, the agency is afforded some of the control of public employees while gaining the efficiencies of private.

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

Clean and Healthy Lifestyle Behavior (PHBS Program) for Children with Intellectual Disability

This article describes the use of the National Health Interview Survey-Disability Supplement (NHIS-D) to estimate the prevalence and general characteristics of persons with intellectual and/or developmental disabilities in the non-institutionalized U.S. population. It provides estimates of the populations of non-institutionalized persons with intellectual disability (defined categorically), with developmental disabilities (defined functionally) and with both. It describes how the prevalence of intellectual and/or developmental disabilities varies by age, poverty status and other demographic variables. It describes how intellectual disabilities and developmental disabilities are operationally different, and how the people identified in those groups differ substantially both in number and in demographic characteristics. An analysis of poverty status among adults reveals that poverty is significantly more common for women, people who were not white, people with intellectual or developmental disabilities, adults with less than 12 years of education, and people living with a spouse or alone (as compared to people living with relatives such as parents or siblings).

The provision of health and social services for people with intellectual and developmental disabilities has historically followed a different path in Asian countries than in Western countries. The most important of these paths is that there was no institutionalization in the history of Taiwan in the last 150 years. However, residential services for people with intellectual and developmental disabilities in Taiwan are available, but not on a large scale. One reason is that families are concerned about stigmatization if they have a family member with intellectual disabilities. Such families are not likely to seek outside services, choosing instead to have the immediate family or relatives provide the care. The other reason has to do with the fact that during the past 200–300 years, Chinese society has not been influenced by social Darwinism, which contributed to social separation and the isolation of people with intellectual disabilities from the rest of the society. This unique history has not been recognized by most Western researchers. Because Asian culture is both rich and highly diversified, it is nearly impossible to discuss in a single chapter the health and social services available for people with intellectual disability. Asia has not been a mainstream focus for Western researchers and most of the published Western research work on intellectual disability services in Asian countries has assumed a Western perspective and has ignored the characteristics of these services that are unique to Asia. In the last two to three decades, there has been little published research about the situation of people with intellectual or developmental disabilities in Asian countries, and only recently a few reports have appeared in Western journals. In this chapter, I use the case of Taiwan to open a window for understanding the status of health and social services for people with intellectual disability in Asia. Taiwan stands out partly because in the last 15 years many articles about intellectual and developmental disabilities have been published in Western journals, which provides material for comparison. The other reason is that Taiwan has the most advanced democratic system of any country influenced by Chinese culture, and disability-rights advocacy groups in Taiwan have actively participated in various policy-making initiatives; this has not been true in China or Hong Kong. From a disability-rights viewpoint, the accumulating research results from Taiwan offer Western countries an opportunity to learn about the health and social services available to people with intellectual disability in Taiwan and to see how they compare to the services available in the West.

Entirely revised and updated, this edition of a very well-received and successful book provides the essentials for all those involved in the fields of intellectual, developmental and learning disabilities and mental retardation, drawing both on clinical experience and the latest research findings. An international, multidisciplinary team of experts cover the available literature in full and bring together the most relevant and useful information on mental health and behavioural problems of people with intellectual, developmental and learning disabilities and mental retardation. In addition, this book highlights the principles behind clinical practice for assessment, management and services. It offers hands-on, practical advice for psychiatrists, psychologists, nurses, therapists, social workers, managers and service providers

Editorial: Use of psychotropic agents in intellectual and developmental disabilities

Subject area This case focuses on organizational development, leadership and HR management questions. Study level/applicability This case is mainly aimed at students specialized in leadership, organizational development and HR, or in MBA and executive education. However, undergraduate students can benefit from it as well and learn about key terms related to organizational development and HR. Case overview Loxon Solutions is a Hungarian technology startup founded in 2000 that develops various software solutions for the banking industry to improve processes such as retail and corporate landing, collateral management and monitoring, among others. The company grew significantly since being founded, and from a small IT company it became a significant player in the banking software industry all around the world. However, with rapid extension comes a drastic internal transformation as well: Loxon now employs 252 people, has 5 physical offices in 2 different countries and is trying to balance an effective organizational structure and a friendly startup environment. It is clear that the company needs to adapt its previously informal structure to fit the now middle-sized organization while maintaining the current benefits of their culture. Also, they require stability and maturity which the current team consisting of mostly junior employees and the significant fluctuation cannot provide. Tamas Erni, the CEO and Kristof Farkas, the founder of Loxon are now working on these pressing issues with the company’s HR department to rethink the company’s organizational structure and policies as well as their hiring and employer branding strategies. Expected learning outcomes Students should get familiar with typical organizational structure models, the meaning of Employee Value Proposition and main KPIs related to hiring and employee retention. Supplementary materials Teaching notes are available for educators only. Subject code CSS 6: HR Management.

The costs of providing services and supports for people with intellectual and developmental disabilities are significant, whether living with family, their own homes, or other alternative living arrangements. Others (Heller, Caldwell, & Factor, 2007) have presented information on the general social trends and changes in service patterns. In this article, we focus on the financial aspects of caregiving; we hope that the information will be used by advocates to educate policymakers and journalists. The need for publicly funded services and supports for people with intellectual and developmental disabilities and their families is explained. The financial costs—compared with generally understood major life costs—are significant and beyond the means of most families.Most individuals with a disability live at home and are provided supports by their families. Some require supports their entire lives. Less than 20% of the U.S. population with intellectual and developmental disabilities lives in out-of-home placement (Stancliffe & Lakin, 2004). Public funding for family care is on the rise. In 1994, approximately 23.8% of the total recipients of Medicaid Home and Community Based Waiver Services, the primary public financing vehicle for supports and services for people with intellectual disabilities, lived with family members. By 2005, that number had increased to more than 45% (Lakin et al., 2006).Families expect to expend resources on their children, whether their child does or does not have a disability. The U.S. Department of Agriculture (Leno, 2006) calculated that raising a child without disabilities from birth to Age 17 averages at least $190,000 in 2005 dollars, with expenses broken down as follows: housing, food, transportation, clothing, health-related expenses, childcare–education, and miscellaneous.The basic expense categories are the same for an individual with a disability versus one without. The amount of money required for some expense categories tends to be more for some individuals with a disability compared with an individual without a disability (Stancliffe & Lakin, 2004).Additional expense categories for persons with disabilities include respite care, specialized or adaptive equipment, environmental modifications, and therapeutic services. Opportunity costs such as foregone earnings can also be disproportionate to families with a child with a disability (because of caregiving duties) and may impact family finances. Baldwin (1985) estimated overall daily living expenses for families with a child with a disability to be 8% to 20% greater than their counterparts without a disability. Hewitt, Larson, and Lakin (2000) estimated that the average out-of-pocket family costs for special services and health care for an individual with disabilities add an additional $16,058 to the average home care costs per year, not accounting for opportunity costs such as foregone earnings. Fujiura, Roccoforte, and Braddock (1994) estimated that out-of-pocket spending by families caring for an adult family member with intellectual or a related developmental disability adds at least $6,300 in additional expenditures a year. Regardless of which amount is used, the annual costs significantly impact family budgets.When do the costs of in-home family care become unaffordable, beyond the financial resources available to a family? We provide a framework for understanding this question, using three different measures of affordability: (a) the researchers' index, (b) the housing affordability index, and (c) typical expenses for most families compared with the cost of caring for a family member with a disability.Health care researchers (Hong & Kim, 2000; Stum et al., 1998) have developed a ratio determining whether out-of-pocket expenditures will be considered financially catastrophic for a family: a direct ratio of out-of-pocket expenditures to a family's gross income. Expenditures for medical care become financially catastrophic when they endanger the family's ability to maintain its customary standard of living. We are not equating disability with illness, but we maintain the financial principles are the same. For this index, researchers typically choose some level between 10% and 20 % as the catastrophic threshold, or a ratio of .10 to .20 to gross income (Stum et al., 1998).The HAI, from the National Association of Realtors (http://www.realtor.org), assesses whether homes are affordable (Baker, 2002). This index is the ratio of median household income to the required income to qualify (known as qualifying income) for a loan on a median-priced, existing single family home. When this ratio—mortgage payment to family income—is low, the affordability index is high, meaning housing is relatively affordable. An index value of 100 is used as the reference value, meaning that a typical home buyer would be able to afford a median priced home. A lower value indicates the family does not have the income for a median-priced home.We propose an affordability index for families providing support to a member with a disability, created on the basis of the HAI. It demonstrates whether the cost of caregiving is affordable for the average family. Assume monthly out-of-pocket spending for the care of a family member with a disability at $525 (Fujiura et al., 1994), with the mean U.S. household income at $39,155 (U.S. Census, 2005). To calculate the qualifying income, the current researcher's index of .10 is used (Stum et al., 1998). Therefore, for $525 monthly expenditures, use $525 × 10 (10% of maximum) × 12 months/year = $63,000 (qualifying income). To calculate the disability affordability index (DAI), divide the household income ($39,155) by the qualifying income ($63,000), and multiply by 100 which equals 62 for this example. This value would indicate that, for this example, the average family has only 62% of the income required to care for a family member with a disability. If 10% is used as the level of out-of-pocket expenses to determine the catastrophic threshold for a family, caregiving is not affordable for the average family with a member with a disability. Based on this result, one could make the assumption that this in turn would affect the ability of the family to pay for other typical expenses such as housing, other children, retirement, and college.Cost comparisons can also be used to determine the magnitude of caregiving. Cost comparisons assess caretaking affordability by comparing costs associated with taking care of an individual with a disability with the median yearly costs of typical expenses for an individual without a disability. Leno (2006) estimated that the annual cost of raising a typical child is approximately $10,600. Fujiura et al. (1994) estimated the extra nonreimbursed spending to be $6,300 per year to care for a family member with an intellectual disability or a related developmental disability. Considering the costs of a child from birth to 17 years, this is a total additional family expense of $107,100, over 60% more per year than the cost of a typical child just for the first 17 years. Individuals with a developmental disability may need care for 60 years or more, as the life span of people with developmental disabilities increases with better health care (Heller, Caldwell, & Factor, 2007).Comparison with expenses generally understood by a majority of Americans helps put this in perspective. American society attaches importance to the affordability of a college education (Hill, 2008). The median cost for 4 years at Ohio State University (home state of one of the authors) at 2008 prices, including tuition, room, and board, will cost a family approximately $68,000 (for in-state tuition; The Ohio State University, 2008), or only 7% of the cost of caring for a child with a disability from birth to Age 60.In the same state, Ohio, the median yearly homeowner costs are approximately $11,556. The median gross yearly house rental is estimated to be almost $6,100. Over a 17-year period, this cost would equal $103,700, slightly less than the cost of raising a child with a disability to Age 17. Housing costs accounted for 72% of U.S. families' debt in 1998 (Barnes & Young, 2003). A rule of thumb, increasingly being questioned (Hill, 2008), is that housing costs should not exceed 30%–35% of gross income (Greninger, Hampton, Kitt, & Achacoso, 1996). Both of these costs, for education and housing, can be less costly than the additional family expense of caregiving. Yet the typical family usually spends years planning, budgeting, saving, and sometimes borrowing for the costs of higher education and housing. The cost for education may be for 4 years, and the cost of housing may be for 15 or 30 years. Again, individuals with disabilities are living longer than ever before; therefore, caring for someone with a disability will sometimes affect a family's finances for 60 or more years.As parents age and are less able to care for their child with a disability, individuals will need community support, both paid and unpaid. There are wide variations among states and their willingness to provide the needed supports. For example, in 2004, the Maryland Developmental Disabilities Administration funded 22,000 persons with developmental disabilities in a comprehensive array of home and community-based supports. This same state has a waiting list of nearly 11,000 for similar services (The Arc of Maryland, 2007).Although research pertaining to the fiscal impacts of caring for a family member with a disability is complicated, it is clear that having a family member with a disability has an adverse effect on a family's finances. Parents' concerns to do the best for their children will usually override financial considerations, which places parents in a particularly vulnerable situation during a child's illness (Callery, 1997) or lifelong disability.The collection and development of information related to the affordability of caregiving have shown clearly that there is a need to improve public policy to adequately address the financial costs of family caregiving. As a nation, we lack a coherent family policy (Bogenschneider, 2000). For families raising a child with an intellectual or developmental disability, the interaction between the family and both federal and state public policy is crucial. The level of available public support, varying widely by state, is an important factor contributing to the burden of family caregiving. Based on the recent literature and the findings presented here, a widespread nationwide implementation of family support programs is needed (Feinberg, Wolkowitz, & Goldstein, 2006). Direct, indirect, and hidden costs of family caregiving have to be considered when public policies are developed. Left unchecked, the cost of caregiving will force more and more American families into significant debt.

Persons with intellectual and developmental disabilities have more than average health problems throughout their lifespan, and yet they experience significant barriers to healthcare that meets their needs. One of the surmountable barriers is medical and allied health practitioner inexperience. The purpose of this chapter is to educate and empower medical professionals to address the needs of aging individuals diagnosed with intellectual and developmental disabilities. Intellectual and developmental disabilities encompass a heterogeneous population. This chapter addresses age-related issues pertinent to those diagnosed with intellectual and developmental disabilities such as intellectual disability and autism spectrum disorder. Changes in diagnostic criteria, terms, and trends over time have influenced how people with intellectual and developmental disabilities have been labeled and where they access care. Despite the heterogeneity of etiologies, presentations, comorbidities, and social contexts, there are common considerations for those aging with intellectual and developmental disabilities. Biopsychosocial models of care are particularly vital for individuals who present with complex presentations and backgrounds of varying physical, medical, and neuropsychiatric (including cognitive, mood, anxiety, and language) concerns. A systematic approach with an emphasis on patient-centered management will be illustrated with two case examples (woman with Down syndrome and gentleman with an autism spectrum disorder). Tools and resources are provided to guide and augment practice for patients aging with intellectual and developmental disabilities.

BackgroundSocial gradients and ethnic disparities have been reported in some forms of intellectual and developmental disabilities. However, information on the association between area deprivation, ethnicity and other forms of intellectual...