Our Stories, Our Data: Co-designing Visualizations with People with Intellectual and Developmental Disabilities

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

Presidential Address, 2022-Dismantling Systemic Barriers: Re-Envisioning Equity and Inclusion.

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.

Diagnostic Manual–Intellectual Disability: A Textbook of Diagnosis of Mental Disorders in Persons With Intellectual Disability, by R. Fletcher, E. Loschen, C. Stavrakaki, and M. First

Characteristics and Needs of People With Intellectual Disability Who Have Higher IQs

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

Promoting Self-Determination in Students with Developmental Disabilities

The Alliance for Full Participation (AFP) is a coalition of 14 national organizations organized with the purpose of focusing separate constituencies on long-term initiatives for people with intellectual and developmental disabilities. At the current time, AFP is emphasizing employment and real jobs. Current AFP members include the American Association on Intellectual and Developmental Disabilities (AAIDD), American Network of Community Options and Resources (ANCOR), The Arc, Association of University Centers on Disability (AUCD), Autism Society of America (ASA), Association for Persons in Supported Employment (ASPE), Council on Quality and Leadership (CQL), National Association of Councils on Developmental Disabilities (NACDD), National Association of Direct Support Professionals (NADSP),

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.

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

End-of-Life Care for Children and Adults With Intellectual and Developmental Disabilities