American Association On Intellectual And Developmental Disabilities Research Articles

Developing and Evaluating the Fidelity and Understandability of Plain Language Summaries of Position Statements.

The American Association on Intellectual and Developmental Disabilities (AAIDD) and The Arc of the United States (The Arc) have a long history of taking jointly held positions on matters of public policy that affect people with intellectual and developmental disabilities (IDD). This article describes the methods used to develop and evaluate the understandability and fidelity of written plain language summaries of the organizations' joint position statements for an audience of people with IDD who read. Implications for adapting source material for nonreading audiences are discussed.

Special Issue: From the Front Lines: The Direct Support Workforce Development and Reality

In this special issue we focus on topics related to the stability of the direct support workforce. In 2016, the American Association on Intellectual and Developmental Disabilities (AAIDD) and the National Alliance of Direct Support Professionals (NADSP) developed a joint position statement regarding the direct support professional (DSP) workforce. Part of this statement reads:Ameliorating barriers that impact the recruitment, undesirable working conditions, and attrition of DSPs could not be truer today, as the COVID-19 pandemic created enormous challenges in addressing the needs of DSP workers and, some may argue and as projected in the joint statement, turned the clock back on efforts to establish effective systems for DSP workers. Therefore, the purpose of this first of a two-part special issue is to facilitate conversation about factors affecting DSPs who serve people with IDD.As you will discover in the collection of articles in this issue, some difficulties of the DSP workforce existed prior to the COVID-19 pandemic (see Carter et al.; Layden et al.), and some difficulties became relevant during the pandemic (see Hall et al.). Other articles discuss promising supports for DSP workers that stem from the pandemic (see Ham et al.; Rodriguez et al.). Our hope is that this collection of articles will shape practice and policy that will be widely adopted to improve working conditions and reduce the turnover of DSP workers and move us closer to realizing the goals adopted by AAIDD and NADSP in their cause to support the DSP workforce.

Special Issue Introduction: Addressing Healthcare Inequities in Intellectual Disability and Developmental Disabilities.

Special Issue Introduction: Addressing Healthcare Inequities in Intellectual Disability and Developmental Disabilities.

Presidential Address: The Next Generation Workforce, A Call to Action

Presidential Address: The Next Generation Workforce, A Call to Action

Commentary on the 12th Edition of Intellectual Disability: Definition, Diagnosis, Classification, and Systems of Supports

Commentary on the 12th Edition of <i>Intellectual Disability: Definition, Diagnosis, Classification, and Systems of Supports</i>

An Overview of Intellectual Disability: Definition, Diagnosis, Classification, and Systems of Supports (12th ed.).

An Overview of Intellectual Disability: Definition, Diagnosis, Classification, and Systems of Supports (12th ed.).

Is the Intellectual Functioning Component of AAIDD's 12th Manual Satisficing?

Is the Intellectual Functioning Component of AAIDD's 12th Manual Satisficing?

Who Is Leading the Field in 2020?: AAIDD Students and Early Career Professionals.

The American Association on Intellectual and Developmental Disabilities (AAIDD) has been a leader in the field of intellectual and developmental disabilities since its founding in 1876. Today, student and early career professionals make up approximately 8.5% of the organization, with their engagement supported by the Student and Early Career Professional Interest Network (SECP). An article by Havercamp et al. (2003), "Who Will Lead the Field Beyond 2020?", recommended organizational changes that have been largely addressed in the years following by SECP. The present research replicates Havercamp et al.'s (2003) original survey of the organization's student and early career professionals, and results support the effectiveness of SECP as a welcoming platform from which students and early career professionals can establish themselves in the organization.

Blurring the Boundaries: Reflections From Early Career Faculty During the COVID-19 Era.

The last three issues of Intellectual and Developmental Disabilities (IDD) have featured perspectives from a diverse set of contributors on how the field of intellectual and developmental disabilities (IDD) is being impacted by COVID-19. As four newly appointed faculty members with diverse backgrounds, the editor of IDD invited us to share our experiences with beginning academic careers during this unique time. In making this request, he pointed out that approximately half the members of the American Association on Intellectual and Developmental Disabilities (AAIDD) are those who have some type of affiliation with an institution of higher education. While the perspectives outlined in this article do not represent those of all early career faculty, we hope our stories resonate with IDD readers who may be facing similar circumstances. This article includes a series of brief essays addressing how the pandemic has affected our academic job searches, research, teaching, and service. Although penned by different authors, each section encompasses our collective experiences, concerns, and hopes for the broader IDD community. We close with guiding questions that might support more socially responsive and integrated approaches to traditional academic roles as faculty continue to navigate the repercussions of COVID-19.

Planejamento de ensino para jovens com síndrome de Down a partir da Escala de Intensidade de Apoio (SIS)

O estudo teve como objetivo avaliar a intensidade de apoio nos comportamentos adaptativos de jovens com síndrome de Down e aplicar em colaboração com o professor, um planejamento de ensino a partir da necessidade de apoio. O estudo seguiu a abordagem qualitativa descritiva pautada na investigação ação. Foram participantes uma professora de Educação Especial, dois jovens com síndrome de Down e seus respectivos pais. A coleta de dados foi realizada em uma Associação de Pais e Amigos dos Excepcionais, de um município de médio porte, localizado no interior do estado de São Paulo e na residência dos participantes. Os instrumentos utilizados foram a Escala de Intensidade de Apoio – SIS, desenvolvida pela Associação Americana de Deficiência Intelectual e Desenvolvimento (AAIDD), tendo como respondente os pais dos jovens com síndrome de Down e um roteiro para elaboração do planejamento de ensino. Os dados foram organizados em duas categorias de acordo com os temas abordados: necessidade de apoio nos comportamentos adaptativos dos jovens com síndrome de Down e elaboração e aplicação do planejamento de ensino a partir da necessidade de apoio. Como resultados, verificou-se que a área em que os jovens com síndrome de Down necessitavam de maior apoio era em aprendizagem ao longo da vida e após o planejamento de ensino, houveram modificações positivas no envolvimento nas atividades propostas, interação com colegas, professora e pesquisadora. Espera-se que este estudo sirva como exemplo de boas práticas, assim como de indicação para o uso da Escala SIS como ferramenta para o planejamento de ensino.

Reflecting on the Education Position Statement of AAIDD and The Arc

AbstractThis article expands on 10 critical actions within the American Association on Intellectual and Developmental Disabilities (AAIDD) and The Arc's 2018 joint position statement on the right of students with intellectual and developmental disabilities (IDD) to have a free and appropriate public education (FAPE): (a) zero reject; (b) nondiscriminatory and comprehensive eligibility evaluations and appropriate assessments; (c) high expectations and FAPE; (d) autonomy, self-determination, and decision-making supports; (e) inclusion and least restrictive environments (LRE); (f) safe and supportive education environments; (g) school choice; (h) family and student participation; (i) lifelong education, transition, and postsecondary education; and (j) system capacity development, funding, oversight, and accountability. Research findings documenting positive outcomes associated with implementing each area of action are described and relevant legal mandates and case law are discussed. Recommendations are made for changes to educational systems and practices that create barriers to the access of FAPE for students with IDD.

Adaptive Functioning (AF) Evaluations of Foreign Nationals Facing Capital Punishment

Abstract Objective The US Supreme Court ruled against the application of the death penalty to individuals with intellectual disability (ID) (Atkins v. Virginia, 2002). Diagnostic criteria for ID require subnormal adaptive functioning (AF) in addition to IQ test scores (American Psychiatric Association [APA], 2013). The American Association on Intellectual and Developmental Disabilities (AAIDD) (2010, 2012) and APA (2013) recommend using culturally sensitive approaches. Assessing AF in immigrants is a challenge because their cultural backgrounds are different than those of the standardization samples of United States AF measures. When typical AF measures are not appropriate, AAIDD (2010) offers guidelines about appropriate sources such as school, work, and medical records, prior psychosocial evaluations, and qualitative adaptive behavior interviews with multiple informants. However, defendants facing the death penalty are often raised in impoverished areas with a paucity of pertinent documentation. This study identifies and discusses issues related to the use of self-report, selection of respondents, questions, collateral information, and clinical judgment in AF evaluations of immigrants facing the death penalty. Case Description We present a case study of an AF evaluation of a Mexican national seeking ID exemption from capital punishment. Discussion We offer a framework for developing and judging the quality of an AF evaluation that adheres to the (AAIDD) (2010, 2012) and APA (2013) guidelines, and includes 1) strengths and limitations of adaptive functioning in relation to others of his age group and culture; 2) reliable evidence concerning the individual’s history in specific periods of time; 3) an account of the individual’s cultural and linguistic differences; and 4) an account for potential bias on the respondents’ side. References Atkins v. Virginia, 536 U.S. 304 (2002). American Psychiatric Association. Diagnostic and statistical manual of mental disorders. fifth ed. Washington, DC: APA; 2013. American Psychological Association. (2016). Revision of ethical standard 3.04 of the “Ethical Principles of Psychologists and Code of Conduct” (2002, as amended 2010). American Psychologist, 71, 900. Schalock, R.L., Borthwick-Duffy, S.A.,Bradley, V. J., Buntix, W.H.E.,.Coulter, D.L., Craig, E.M…..Yeager, M.H. (2010). Intellectual disability: Definition, classification, and systems of supports. (11th ed.).Washington, DC: American Association on Intellectual and Developmental Disabilities. doi:978-1-935304-04-3. Schalock, R.L., Luckasson, R.A., Bradley, V., Buntinx, W.H.E., Lachapelle, Y., Shogren, K.A…Wehmeyer, M.L. (2012). Intellectual disability: Definition, classification, and system of supports: User's Guide. Washington, DC: American Association on Intellectual and Developmental Disabilities.

Ensuring Quality Education to Promote Transition: A Summary of Existing Studies

Abstract The American Association on Intellectual and Developmental Disabilities (AAIDD) hosted the National Goals in Research, Policy, and Practice working meeting in August, 2015, to identify key national policies, priorities, and practices to serve and support students with intellectual and developmental disabilities (IDD) at the secondary level. The purpose of this article is to extend the discussion of several topics discussed at the meeting and suggest future research areas in the areas of: academic instruction; social skills training; balancing/aligning academic, functional, and transition education skills; importance of health and safety skills; extending common core standards to include functional and transition skills; teaching and realizing self-determination skills; preparing students with IDD for postsecondary educational opportunities; weighing the respective benefits of inclusive and community-based instructional activities; and promoting citizenship (teaching voting skills). To ensure quality secondary-level programs for students with IDD, the authors recommend that the above content areas be considered.

Intellectual Disability Policy as Developed, Expressed, and Evaluated in AAIDD/The Arc Joint Statements: The Role of Organization Position Statements.

The American Association on Intellectual and Developmental Disabilities (AAIDD) and The Arc of the United States (The Arc) have a long history of joined efforts to develop, express, and evaluate disability policies. These efforts have resulted in a series of formal statements on critical issues such as education, healthcare, human rights, and criminal justice. Their joint efforts further important policy goals including providing clear strong communication about important policy values and directions, promulgating key principles of high quality supports and services, affirming best professional practices, and emphasizing personal outcomes. In addition, the joint efforts (a) affirm important aspects of organization identity; (b) enhance the organizations' abilities to assure the input of a wide variety of perspectives; (c) engage members' expanded ranges of experiences and talents; (d) multiply staff and leadership resources; (e) increase communication strength and avenues; and (f) establish processes for timely review and revision of policies as critical disability issues arise or change, and new opportunities for policy integration and advancement occur. This article describes the processes used to develop, express, and evaluate the position statements; summarizes the policy content of several joint statements; and discusses the role of these organization position statements.

Applying the Universal Design for Learning Framework for Individuals With Intellectual Disability: The Future Must Be Now.

The current research in Universal Design for Learning (UDL) for students with intellectual disability (ID) is briefly summarized and considered in light of the national goals presented by the American Association on Intellectual and Developmental Disabilities (AAIDD) in this article. Additionally, an action plan is provided for researchers and practitioners to extend knowledge on the implementation of the UDL framework inclusive of individuals with ID.

Presidential Address, 2015--Making a Difference Through Research, Practice, and Policy.

It is with great pleasure that I address my fellow members of the American Association on Intellectual and Developmental Disabilities (AAIDD). This audience contains mentors, colleagues, existing and emerging leaders at your agencies and universities, self-advocates, and the future leaders of AAIDD. As is often the case when one is asked to give remarks, the immediate thought is: What can I say that is meaningful and helpful to others? So, I’ll begin at the beginning and give some insight into my leadership path. One question students often ask me at the University of Kansas is: How did your career in disability research begin? My career within this field began in general education. I earned a degree in elementary education at the Pennsylvania State University and received teacher certification right around the time that landmark legislation was signed in 1975 providing support for instruction and inclusion of individuals with disabilities in public schools. As special education in the public schools began and evolved into the system of services we have today, I raised a family of three children while taking disability-related classes in reading disorders and cognitive disabilities at universities in New York and Texas. As current special education began with the Education for All Handicapped Children Act, enacted in 1975, and most recently evolved through the Individuals With Disabilities Education Act (IDEA, 2004), so did my perspectives on disability-related services. I also met Michael Wehmeyer, a fellow doctoral student at the University of Texas at Dallas, who is a beacon in the field of disability and self-determination and a mentor to many, including me and our colleague, Karrie Shogren, regarding research and effective practice. Mike also introduced me to AAIDD as a professional home. Following my work in early intervention—birth to age 3 services in family homes and a few years as a researcher at The Arc of the United States—I settled into the role of research professor at the University of Kansas in Lawrence, working primarily to address the gaps in research for individuals with disabilities. Another milestone in policy legislation that spans many of our careers is this year’s 25th anniversary of the Americans With Disability Act (ADA), signed in 1990 by President George H. W. Bush. This momentous anniversary of the original legislation will also help me center my remarks on what has happened in the years since 1990, both within our organization and in the field of disability research, policy, and practice.

Honor the Past. Then Get Over It.

This speech was presented at a conference, the National Goals in Research, Policy, and Practice, held in Washington, DC, on August 6-7, 2015. The conference was a working meeting to summarize the current state of knowledge and identify a platform of national goals in research, practice, and policy in intellectual and developmental disabilities. The meeting was jointly organized by the Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota; Rehabilitation Research and Training Center on Developmental Disabilities and Health, Institute on Disability and Human Development, University of Illinois Chicago; Rehabilitation Research and Training Center on Advancing Employment for Individuals with Intellectual and Developmental Disabilities, Institute for Community Inclusion, University of Massachusetts Boston; The Arc of the United States; Association of University Centers on Disabilities (AUCD); and American Association on Intellectual and Developmental Disabilities (AAIDD), with the support of National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

Introduction to the Special Issue: National Goals 2015

In August 2015, the Research and Training Center on Community Living at the University of Minnesota, the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago, the Rehabilitation Research and Training Center on Advancing Employment for Individuals With Intellectual and Developmental Disabilities at the University of MassachusettsBoston, the American Association on Intellectual and Developmental Disabilities (AAIDD), the Association of University Centers on Disability (AUCD), and The Arc of the United States hosted the National Goals in Research, Practice, and Policy conference (also referred to as the National Goals 2015 conference). The purpose of this invitational conference was to bring together researchers, individuals with intellectual and developmental disabilities, family members, policy makers/advocates, practitioners, and other stakeholders to summarize the current state of knowledge and identify a platform of national goals in research that will have the greatest impact on practice and policy concerning intellectual and developmental disabilities (IDD) by 2025. Within the context of civil rights, notably advanced through the Americans With Disabilities Act (ADA, 1990), Individuals With Disabilities Education Act (IDEA, 2006), and other landmark legislation, the resultant goals reflect the commitment the United States has already made to people with IDD through federal laws and regulations, court decisions, and national policy initiatives and illuminate the nation’s expectations for the outcomes of relevant public policies and programs. Building upon the findings of the 2003 National Goals meeting, entitled Keeping the Promises: National Goals, State of Knowledge, and Research Agenda for Persons With Intellectual and Developmental Disabilities, the outcomes of the August 2015 conference emphasize the vision for the future and leadership of research, practice, and policy in intellectual and developmental disabilities. The conference had 10 areas of focus: selfdetermination and self-advocacy; social inclusion; education; employment and economic self-sufficiency; long-term supports and services; health and wellness; aging, retirement, and end of life; supports for families across the life course; trends in the workforce; and justice. The 2015 National Goals in Research, Practice, and Policy conference was kicked off by plenary presentations designed to provide all participants with an overview of where people with IDD live, where they work, the extent of financial resources spent on services and support, and the broad outcomes of these services and supports. Participants were also inspired to honor the past and move on toward the future embracing and building new ways of thinking and new ways of doing.

Presidential address, 2014-embracing complexity: community inclusion, participation, and citizenship.

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

Intellectual disability in India: Charity to right based.

Byline: B. Chavan, Abhijit. Rozatkar According to the Census 2001, [sup][1] there are 21 million people with disabilities in India who constitute 2.13% of the total population. In contrast, the National Sample Survey Organization (NSSO) estimated that the number of persons with disabilities in India is 1.8% of the Indian population; [sup][2] of which 75% of persons with disabilities live in rural areas, 49% of them are literate and only 34% are employed. Both the surveys included the persons with visual, hearing, speech, locomotor, and mental disabilities, but the distribution in each category according to the two surveys differs drastically. However, experts working in the field of developmental disabilities feel that prevalence of mental disability is much higher. [sup][3] Intellectual disability (ID) is characterized by significant impairment in cognitive and adaptive behavior. The term used to describe this condition has gone under constant change over the years due to social and political compulsions. The main reason to search for a new term is to find a least stigmatizing terminology. Thus, mental retardation, which was in use world over till late 20 [sup]th century, has now been replaced with ID in most English speaking countries. Diagnostic and Statistical Manual 5 [sup]th Revision (DSM-V) has replaced it with ID and the much anticipated 11 [sup]th revision of International Classification of Disease is likely to do so. [sup][4],[5] The history of ID has passed through a very turbulent phase and can be briefly summarized under: i) Pre-industrialization phase: From the dawn of civilization to the beginning of industrialization period, people born with "abnormal" physiognomy were treated with fear or ridicule (and perhaps continue to do so in many societies). ii) Industrialization phase: Although industrial revolution is associated with increasing wealth and productivity, it also brought in many ill effects. Migration to bigger cities led to development of slums, poverty, diseases, and crimes. Families started valuing those with vocational ability and started neglecting members who were not able to work. The individual who had low intelligence were left out and were labeled as feeble-minded, degrading, and stigmatizing. iii) Humanitarian approach: In 1846, Dr Samuel Gridley Howe from Boston persuaded Massachusetts Legislature to appoint a commission to inquire into the condition of 'idiots'. After survey and close study, he for the first time observed, "These are the proper subjects of education, they can be taught to do some kind of labor and they can be made self-sufficient". [sup][6] It led to many state run schools for these persons. However, these schools were a failure because Howe and his fellows (Sequin and Wilbur) were too optimistic, unrealistic in expectations as they expected to restore all 'idiots' to normal functioning. iv) Demonology of the defectives: The scientific developments of Darwinism, sociological approach, Mendelian theory of genetics, and Binet psychometric tests advocated, directly or indirectly that feeble minded individuals, who could be easily identified and quantified, are risk to the society. Thus, the society started thinking ways to prevent feeble mindedness from occurring and working on ways how to control those in whom it did occur. The segregation seemed to be the best method where feeble minded could be cheaply and wisely cared for along with prevention and societal protection. v) Period of John F Kennedy: In 1963, based on recommendations of President's Panel on Mental Retardation, JF Kennedy made a speech to the Congress of United States and asked for new resources to address the needs for people with mental retardation. Soon, virtually every state launched special educational programs for these persons. [sup][6] Currently, the term ID is being used instead of mental retardation. This transition in terminology is supported by organization like the American Association on Intellectual and Developmental Disabilities (AAIDD), International Association for the Scientific Study of Intellectual Disabilities (IASSID), and President's Committee for People with Intellectual Disabilities. …