The Validation of the Self-Determination Inventory: Student Report (SDI:SR) Japanese Translation with High School Students with Intellectual Disability

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

The purpose of this study was to explore the cross-cultural validity of the Self-Determination Inventory: Student Report, a newly developed measure of self-determination grounded in Causal Agency Theory. The tool was translated to Spanish and administered to American and Spanish adolescents. The sample was structured to include adolescents with and without intellectual disability in both cultural contexts. More than 3,000 students in the U.S. and Spain aged 13 to 22 completed the assessment. Findings suggest that the same set of items can be used across cultural contexts and in youth with and without intellectual disability, although there are some specific differences in item functioning across students with and without intellectual disability in Spain that must be further researched. There were specific patterns of differences in latent self-determination means, with students with intellectual disability scoring lower in the U.S. and Spain. Implications for assessment research and practice in diverse cultural contexts are explored.

A long line of research has established a relationship between self-determination and positive adult outcomes. Findings from such research highlight that it is critical to provide opportunities and supports for people with intellectual and developmental disabilities to use skills associated with self-determination (e.g., decision-making, problem-solving, goal setting, and attainment) in environments where they live, work, and learn. However, various environmental factors (e.g., living arrangement, employment status) can be strong indicators of how people with intellectual and developmental disabilities develop and express their self-determination. Recently, the Self-Determination Inventory: Adult Report (SDI:AR) was developed as a technology-based measure of self-determination for adults with and without disabilities ages 18 and over. No studies have investigated how environmental factors influence responses on the SDI:AR, including responses to specific items linked to each of the essential characteristics defined by Causal Agency Theory. Using the SDI:AR validation data, this study examined how environmental factors impacted self-determination of adults with intellectual and developmental disabilities. The findings show specific environmental factors impact overall self-determination for adults with intellectual and developmental disabilities as well as responses on SDI:AR items. Consistent with previous research, the present study suggests that certain environmental factors facilitate a greater expression of self-determination in adults with intellectual and developmental disabilities while others restrict its expression. Findings from this study could inform environmental supports needed for adults with intellectual and developmental disabilities to engage in self-determined actions throughout adulthood.

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.

qualitative study involving semi-structured interviews and observations with families of young children with disabilities to examine how the home environment influenced the strategies they used to support their children's self-determination.The authors identified several strategies used by these families, such as encouraging children to choose what they want to eat, creating spaces for play and interaction with others, supporting independent movement around the house, teaching goal achievement during play with toys, and providing opportunities for children to control their personal space and privacy [19,22].Another notable gap identified in Dean et al.'s [31] review was the scarcity of interventions focused on family support and self-determination, with only three studies reporting such interventions.The scarcity of interventions, specifically in Spain, was also highlighted in a previous study by Arellano and Peralta [18] that examined Spanish parents' attitudes towards young children with intellectual disability. Study purpose and research questionsThis paper reports the protocol for a multistage mixed methods study.In order to address the gaps in the body of research discussed above, the purpose of this mixed methods study is to determine how self-determination develops and is supported in home environments in adolescents and young adults with intellectual disability and a mild or moderate level of support, with the aim of developing an intervention to promote self-determination in these environments.The study is based on a family-centered approach, thus considering the family as a unit of intervention and as the key factor in implementing the study.This approach relies on collaboration between families and professionals to achieve the design of the intervention.We aim to answer the following research questions:Research question 1: How do families of adolescents and young adults with intellectual disability support the self-determination of these individuals in their home environments in Spain?Research question 2: What context-sensitive strategies and practical actions are identified by professionals, adolescents and young adults with intellectual disability, and their families as relevant and feasible to support the self-determination of adolescents and young adults with this disability in home environments in Spain?Research question 3: What are the main elements of a desirable context-sensitive intervention to support the self-determination of adolescents and young adults with intellectual disability in their home environments in Spain?Research question 4: What strategies should be used to implement this intervention? Theoretical frameworkThis study is based on the Causal Agency Theory, developed by Shogren et al. [3] to explain how people (with and without disabilities) become self-determined in the course of their lives.Drawing on the principles of strengths-based approaches to disability, positive psychology, and the social-ecological model of disability, which emphasizes the interaction between individuals and their environment, this theory constitutes a valuable framework for explaining how individuals, at different stages of their life, "define the actions and beliefs necessary to engage in self-caused, autonomous action that addresses basic psychological needs" [33].According to this theory, self-determined individuals are causal agents who "act in service to freely chosen goals that propel action" [17].This theory has three main elements: volitional actions, agentic actions, and action-control beliefs (i.e., to decide, to act and to believe).Specific skills associated with volitional action include choice-making, decision-making, goal setting, problem-solving, and planning; those associated with agentic action include self-management, goal-attainment, problem-solving, and self-advocacy; and those related to action-control beliefs include self-awareness and self-knowledge. Methods and analysis Study designUsing a multistage mixed methods design [34,35], this study will include three sequential phases: Phase 1, a grounded theory study involving the families of individuals with intellectual disability, and addressing research question 1; Phase 2,

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 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.

Research suggests adults with intellectual disabilities (ID) have significantly lower levels of physical activity (PA) and fitness compared to the general population. This can affect their physical functioning and increase risk for obesity. Carefully structured exercise has improved functional performance in adults with ID. Limited exercise interventions for adults with ID emphasize self-determined behaviors, which can facilitate PA and ultimately quality of life among adults with ID. Causal Agency Theory (CAT) explains how people become self-determined; that is how they develop the actions and beliefs necessary to engage in self-caused, autonomous action in response to basic psychological needs and autonomous motivation as well as contextual and environmental challenges. PURPOSE: To examine the effects of a 10-week guided progressive resistance training (PRT) program on functional and independent performance in adults with ID. METHODS: Using a block randomization, 11 participants (25±6yrs) were allocated to a guided group (GG) and 11 (23±8yrs) to a non-guided group (NGG). GG received a PRT intervention in a community-based fitness center that included 3-week familiarization to promote correct and independent performance of exercises and technology-enhanced strategies to promote CAT skills (e.g., goal setting, choice-making). NGG only received the PRT intervention with instruction typically provided by a certified personal trainer. RESULTS: Paired t tests showed that after the 10-week PRT program, only the GG significantly improved (p < .05) correct and independent performance of 4 PRT exercises and scores on Six-Minute Walk Test (SMWT) and Plank Test compared to the NGG. Both groups significantly improved (p < .05) Chest Press 1RM and Leg Press 1RM. After controlling for preintervention differences, ANCOVA found practically and/or statistically significant differences between GG and NGG for postintervention Chest Press 1RM, F(1, 20) = 3.00, p = .100, ηp2 = .14; Leg Press 1RM, F(1, 20) = 7.25, p = .015, ηp2 = .29; SMWT, F(1, 20) = 10.85, p = .000, ηp2 = .38; and Plank Test, F(1, 20) = 3.49 p = .078, ηp2 = .16. CONCLUSION: The guided PRT intervention with its familiarization training and technology-enhanced CAT strategies has the potential to promote functional and independent performance in adults with ID.

Intellectual disability is characterized by a deficit within an individual's intellectual and adaptive abilities. Young adults (18-25 years old) with intellectual disability are hampered in managing executive functions, such as planning, goal setting, or problem-solving abilities, which might hinder their life functioning during the transition to adulthood and post-school. There is a need for training on abilities which can facilitate individuals within this transition period, one of which is the ability of self-determination. This research aims to see the effectiveness of SDLMI (Self-Determined Learning Model of Instruction) program toward self-determination skills of an 18-year-old individual with intellectual disability. The method applied is a single subject pre-post test design, measured using knowledge evaluation and SDI:SR (Self-Determination Inventory: Students' Report). The results showed an increase in the subject's understanding and belief in their self-determination abilities. Apart from that, the subject was able to set goals and plan to achieve those goals. Even so, the subject still needed assistance in implementing the plans that have been prepared. This study implies the importance to practice self determination abilities for individuals with intellectual disability, accompanied by a structured collaboration and guidance from educational institutions and family.Disabilitas intelektual ditandai dengan adanya defisit pada kemampuan intelektual dan adaptif pada individu. Penyandang disabilitas intelektual yang berusia dewasa muda (18-25 tahun) terkendala dalam pengelolaan fungsi eksekutif yang melibatkan kemampuan perencanaan, penetapan tujuan, ataupun pemecahan masalah, dimana, hal ini dapat menghambat keberfungsian hidup mereka pada masa transisi menuju fase dewasa dan pasca sekolah. Diperlukan adanya pelatihan pada kemampuan yang dapat memfasilitasi individu dalam masa transisi tersebut, salah satunya adalah kemampuan determinasi diri. Penelitian ini bertujuan untuk melihat efektivitas program SDLMI (Self-Determined Learning Model of Instruction) terhadap kemampuan determinasi diri penyandang disabilitas intelektual berusia 18 tahun. Adapun metode yang digunakan adalah desain subjek tunggal pre-post test dengan pengukuran evaluasi pengetahuan dan SDI:SR (Self-Determination Inventory: Students' Report). Hasil penelitian menunjukkan adanya peningkatan dalam pemahaman serta keyakinan subjek terhadap kemampuan determinasi diri. Selain itu, subjek mampu untuk menetapkan tujuan serta melakukan perencanaan untuk mencapai tujuan tersebut. Meskipun begitu, subjek masih memerlukan adanya pendampingan dalam menerapkan perencanaan yang telah disusun. Adapun implikasi dari penelitian ini adalah untuk melatih kemampuan determinasi diri individu penyandang disabilitas intelektual, yang disertai dengan adanya kolaborasi dan bimbingan terstruktur dari institusi pendidikan dan keluarga.

This article summarizes the history, current status, and future directions of self-determination research across the globe, with a focus on applications to the education of students with intellectual and developmental disabilities and their transition from school to adult life. Research on the development, implementation, and outcomes of self-determination assessments and interventions is explored. Causal Agency Theory, a theoretical framework for understanding the development of self-determination as a psychological construct, is reviewed, along with research on the importance of self-determination for inclusion, psychological growth, and overall well-being. Specific approaches, models, and perspectives for addressing the support needs of students with intellectual and developmental disabilities, particularly during transitions, are discussed. Assessment and intervention aligned with Causal Agency Theory, including the Self-Determination Inventory and the Self-Determined Learning Model of Instruction, are introduced. Future directions and emerging areas of research are summarized, including issues related to cultural validity, integration of strengths-based approaches, emerging technologies, and systemic changes in schools and communities.

To evaluate outcomes after major surgery in children and adolescents with intellectual disability. We used 2004 to 2013 claims data from Taiwan's National Health Insurance programme to conduct a nested cohort study, which included 220292 surgical patients aged 6 to 17years. A propensity score matching procedure was used to select 2173 children with intellectual disability and 21730 children without intellectual disability for comparison. Logistic regression was used to calculate the adjusted odds ratios (ORs) and 95% confidence intervals (CIs) of the postoperative complications and 30-day mortality associated with intellectual disability. Children with intellectual disability had a higher risk of postoperative pneumonia (OR 2.16, 95% CI 1.48-3.15; p<0.001), sepsis (OR 1.67, 95% CI 1.28-2.18; p<0.001), and 30-day mortality (OR 2.04, 95% CI 1.05-3.93; p=0.013) compared with children without intellectual disability. Children with intellectual disability also had longer lengths of hospital stay (p<0.001) and higher medical expenditure (p<0.001) when compared with children with no intellectual disability. Children with intellectual disability experienced more complications and higher 30-day mortality after surgery when compared with children without intellectual disability. There is an urgent need to revise the protocols for the perioperative care of this specific population. Surgical patients with intellectual disability are at increased risk of postoperative pneumonia, sepsis, and 30-day mortality. Intellectual disability is associated with higher medical expenditure and increased length of stay in hospital after surgical procedures. The influence of intellectual disability on postoperative outcomes is consistent in both sexes and those aged 10 to 17 years. Low income and a history of fractures significantly impacts postoperative adverse events for patients with intellectual disability.

Since 1990, and with subsequent amendments in 1997 and 2004, the secondary transition provision of the Individuals with Disabilities Education Act (IDEA) have required special educators to plan, coordinate, and deliver transition services for secondary-aged students with disabilities (U.S. Department of Education, 2011). The experiences, social impacts and economic opportunities for employment continue to be monitored at both a federal and state level as part of expected outcomes for public secondary schools. The purpose of this instrumental case study was to examine the alignment of current research with current practice of transition planning for students with intellectual disabilities. The study surveys teachers and interviews parents of student with intellectual disabilities to identify activities and experiences that occurred during their transition phase of exiting high school. The data sources are then compared and aligned with the research on the evidence-based predictors for improving post school outcomes for students with disabilities. The findings show that while most of the evidence-based predictors are part of the transition process, some predictors are not vi implemented or timely for educators and parents to have consistent experiences. This study discussed the triangulation of the data from multiple resources to examine what predictors are implemented, training for teacher and experiences of families as they move toward post school outcomes for employment. The study discusses the implications of school policies, practice and future implications for improving post school outcomes for students with disabilities.

Standardized patients (SPs), now a mainstay of the undergraduate medical education experience, are beginning to play larger roles in helping students build competencies to better serve patients who have disabilities, in educating students about the lived experiences of persons with disabilities, and in testing students' understanding of disability-related issues. In this article, the authors discuss several U.S. training programs that involve SPs who have disabilities or SPs who do not have disabilities but who portray patients who do. The authors review the goals of each program (e.g., to provide students with opportunities to gain experience with patients with disabilities), describe their commonalities (enhancing students' interview skills) and differences (some programs are educational; some are evaluative), and summarize the evaluative data of each. The authors also explore the benefits and challenges of working with SPs with disabilities and of working with SPs without disabilities. Finally, they consider the practical issues (e.g., recruiting SPs) of developing and implementing such programs.

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

This study examined the convergent validity of scores on the Self-Determination Inventory: Student Report, a newly developed assessment of self-determination aligned with Causal Agency Theory with related assessments associated with hope theory (Children’s Hope Scale; CHS), self-determination theory (Perceived Choice and Awareness of Self Scale; PCASS, formerly the Self-Determination Scale), and action-control theory (Control and Means-End Interview; CAMI) in adolescents with and without disabilities of varying race/ethnicities. Measurement invariance was established across the groups, but differences in the patterns of correlations across disability and racial/ethnic groups were found. Generally, as hypothesized, the relationships between the assessments were moderate to high, except for the perceived choice subscale of the PCASS. Implications for future research and practice are discussed.