Diagnostic Overshadowing of Psychological Disorders in People With Intellectual Disability: A Systematic Review.

Diagnostic overshadowing is a bias in which symptoms of a psychological disorder are falsely attributed to a known diagnosis of intellectual disability. This systematic review evaluated all research on diagnostic overshadowing conducted to date, including dissertations and peer-reviewed journal articles. In total, 25 studies were included in this review. Findings suggest diagnostic overshadowing may not be as ubiquitous as originally believed, with one third of included studies finding no overshadowing. The quality of the evidence was graded as "Low" using the LEGEND tool, with common issues including outdated studies, analogue methodologies, small sample sizes and convenience samples, and inappropriate conducting or reporting of statistical analyses. Implications for the field and recommendations for future research are discussed.

Italian Adaptation of the Diagnostic Adaptive Behavior Scale: Application of the Best Practices for Translating and Adapting Tests.

BACKGROUND: The presence during the developmental period of significant limitations in adaptive behavior is an essential component along with deficits in intellectual functioning for diagnosing intellectual disability. Only the Diagnostic Adaptive Behavior Scale (DABS) specifically assesses the required significant limitations in adaptive behavior. The DABS allows measuring the three adaptive behavior domains of conceptual, practical, and social skills, in individuals aged 4 to 21. This paper aims to present the process of translation/adaptation of the DABS for the Italian culture/country and describes the best practices in adapting a test across cultures/countries. METHODS: A six-step procedure was followed: (1) translation/adaptation of the original DABS into Italian; (2) consolidation of the translation/adaptation and preparation of the Preliminary Translation; (3) validation of the Preliminary Translation; (4) revision/adjustment and preparation of the Pretest Translation; (5) field-testing of the Pretest Translation; and (6) revision/ adjustment and preparation of the Final Translation of the DABS Italian version. Two different committees were involved and were composed of members with competencies in the development/adaptation of psychological tests, in the target construct (i.e., adaptive behavior), in the administration of measures assessing the target construct, in the target populations/languages (i.e., American and Italian), and in the target individuals (i.e., with deficits in adaptive behavior). Furthermore, a field-test was conducted with potential test users. RESULTS: The results of the translation/adaptation process described herein present evidence that it resulted in a valid DABS Italian version. It can be said that the final item pool best represented the substantive meaning of the original DABS items in a linguistic style that was understandable and simple while capturing behaviors that can be observed/measured in the Italian cultural context. CONCLUSIONS: Following the best practices in translating/adapting tests, we developed the DABS Italian version with evidence of psychometric properties as excellent as those of the original DABS.

Understanding the Function of Challenging Behavior and Related Intervention and Strategies.

People with intellectual disability or related neurodevelopmental disorders may present the full range of psychiatric and behavioral disorders seen in the general population. In fact, research has shown that they are more susceptible to presenting psychiatric disorders and/or challenging behaviors. When a person with intellectual disability or a related neurodevelopmental disorder exhibits challenging behaviors, it is important to identify the underlying causes. These causes may be multifactorial. In this article we briefly discuss the elements of conducting a comprehensive assessment of the function of presenting challenging behaviors. This multifunctional assessment must include assessing for the presence of physical health problems, an undiagnosed oral health problem, psychiatric disorders, the level of sensory stimuli in the environment, and conclude with an evaluation of antecedents and consequences that may be contributing to a learned behavior. An important resultant of the information gained from this comprehensive functional assessment are intervention strategies that should target the function of the challenging behaviors and lead to reducing these challenging behaviors by addressing the need that they serve.

Using Technology Solutions to Support Home Health, Safety, and Greater Independence and Quality of Life.

Supporting individuals with intellectual disability or related neurodevelopmental disabilities should access all available and types of supports that can enhance their personal independence, autonomy, health, safety, and overall quality of life. Herein we discuss the value of exploring the use of technology solutions as a under-utilized type of support used in our field. We briefly present the availability and benefits of using "smart home" technologies and remote support services technologies that can meet the support needs of this population and may also be a viable alternative to the heavy reliance on direct support professionals. This availability of this workforce has reach crisis levels in some counties, such as the United State. We briefly discuss how these technology solutions, may in some situations, be adequate substitutes to having the physical presence of direct support professionals.

Constructing a preliminary model of school belonging for students with intellectual disability.

The construct of belonging has been studied in many marginalised student groups yet has been understudied among students with intellectual disability. The present study used a large dataset from the United States to quantitatively investigate the construct of belonging among 7th to 12th grade students with the educational classification of "intellectual disability" (n = 670) who responded to a set of questions related to belonging in a nationally representative survey. The purpose of the study was twofold: (1) to identify the latent factors of belonging among students with intellectual disability to create a preliminary model and (2) use the preliminary model to compare belonging among students with intellectual disability with different demographic factors (e.g., race, sex, English proficiency). Exploratory factor analysis revealed a four-factor model of belonging and confirmatory factor analysis suggested the model was a good fit for the data, χ2 = 622.81, p < .001, RMSEA = .049, CFI = 0.879, TLI = 0.868. The study has implications for future avenues of research, including measurement development, exploring the developmental pathway of belonging, and the consequences of not belonging.

Examining the Relationship between Adaptive Behavior and Intelligence.

Adaptive behavior and intelligence are both essential components of defining and diagnosing intellectual disability. The exact relationship between these two constructs still warrants some clarification. Previous studies have examined the correlation between adaptive behavior and intelligence and have reported differing results. Overall, there seems to be agreement that a modest to moderate correlation exists between adaptive behavior and intelligence and that the strength of this relationship may increase as ability level decreases further below the population mean. Using the Diagnostic Adaptive Behavior Scale and a sample of 57 youth aged from 4 to 21 years old, we examined the correlation coefficients between the full-scale IQ scores and their scores obtained on conceptual, social, and practical adaptive skill domain scores, as well as the total adaptive behavior score. The results obtained indicated a modest to moderate correlation between adaptive behavior and intelligence. The strongest statistically significant correlation coefficient was between the full-scale IQ score and the conceptual adaptive skills domain score (r = 0.64). The correlation between the full-scale IQ score and the practical adaptive skills domain (r = 0.39) and social adaptive skills domain (r = 0.28; ns) were more modest. The correlation coefficient between the full-scale IQ score and the total adaptive behavior score also showed a moderate relationship with intelligence (r = 0.46). These findings are consistent with previous research, documenting that adaptive behavior and intelligence are two related but independent constructs. We discuss these findings and their implications.

The French Version of the DABS: Adaptation Process and Preliminary Field Test.

The aim of this study was to develop a transcultural adaptation of the Diagnostic Adaptive Behavior Scale (DABS) in French and to perform a field evaluation of the adapted version of the tool (DABS-F). Eight experts in intellectual and developmental disabilities (IDD) and two professional translators formed two committees to translate the instrument. Thirty-four independent experts in IDD rated the clarity and relevance of the DABS-F. Results indicated complete agreement between the two translation committees and also demonstrated very satisfactory levels of clarity and relevance for the DABS-F. The latter result can be considered as evidence of the content validity of the adapted tool. Adjustments for the few items that presented less satisfactory results are discussed.

Using a Delphi Process to Update the Nisonger Child Behavior Rating Form.

The Nisonger Child Behavior Rating Form (NCBRF) was developed to specifically screen psychopathology and problem behavior in children and adolescents with IDD. This study aimed to update the NCBRF to the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) and screen for the most prevalent psychopathologies that affect children and adolescents with IDD. The authors re-aligned the existing items to fit within a DSM-5 framework, and then used the Delphi method with a panel of experts in IDD to evaluate the NCBRF items. The revision process included deleting and revising existing items and formulating new items. We obtained a final item pool after three iterations. The Delphi process and resulting item pool are described in this article.

The IDD Paradigm of Shared Citizenship: Its Operationalization, Application, Evaluation, and Shaping for the Future.

Changes in the field of intellectual and developmental disabilities (IDD) over the last 5 decades has resulted in the emergence of the shared citizenship paradigm. This paradigm is currently guiding the development of IDD-related policies and practices, and providing a framework for application, research-based inquiry, and evaluation. A shared citizenship paradigm is one that envisions, supports, and requires the engagement and full participation of people with IDD as equal, respected, valued, participatory, and contributing members of every aspect of society. The overall goals of the paradigm are to (a) further advance and focus on people with IDD as active agents in the change process, and (b) improve outcomes for people with IDD, including their access to and opportunity for shared citizenship. This article describes the paradigm's operationalization, application, evaluation, shaping for the future, and specific strategies to overcome implementation challenges.

Professional Responsibility in the Field of Intellectual and Developmental Disabilities: Its Definition, Application, and Impacts.

This article addresses the need to clearly understand professional responsibility and the critical role it plays in the lives of individuals with intellectual and developmental disabilities (IDD), in shaping professions for the better, and in enhancing the functioning of society for the benefit of all. Understanding professional responsibility is especially timely during the current transformation that is occurring in the field of IDD. To that end, the article discusses what is a profession, who is a professional, and what is professional responsibility. Using a logic model framework, the article describes the components of professional responsibility that include its building blocks such as respect for the person, professional ethics and standards, critical thinking skills, and clinical judgment; its use of nine professional practices including empowerment, evidence-based practices, individualized supports, and person-centered outcome evaluation; its outcomes in terms of mutual trust, the improved effectiveness of clinical functions, and professional accountability; and its impacts regarding individual benefit, professional integrity, and societal enhancement.

Italian Diagnostic Adaptive Behavior Scale: Reliability and diagnostic accuracy compared with the Vineland-II.

BACKGROUND: The Diagnostic Adaptive Behavior Scale (DABS) is a short scale with excellent properties to assess the conceptual, social, and practical adaptive behavior domains for the diagnosis of intellectual disability (ID) in individuals aged 4-21 years. AIMS: Investigate the test-retest and inter-respondent reliability of the Italian adaptation of the DABS, verify its diagnostic accuracy in identifying individuals with ID and excluding individuals with typical development (TD), and compare its psychometric properties to those of the Vineland-II. METHODS: Test-retest reliability: The same respondent completed the Italian DABS for the same assessed person at two separate times (n = 71). Inter-respondent reliability: Two respondents for the same assessed person completed the Italian DABS independently (n = 57). Diagnostic accuracy: The same respondent completed the Italian DABS and Vineland-II for the same assessed person (n = 378; 50 % ID, 50 % TD). RESULTS: Italian DABS test-retest and inter-respondent correlation coefficients were excellent. Italian DABS sensitivity was 86 % and specificity was 99 %, Italian DABS Areas Under the ROC Curves were excellent (or good, practical skill domain), and comparable to the results reported for the Vineland-II. CONCLUSIONS: The Italian DABS is an excellent measure to evaluate the adaptive behavior for ID diagnosis; it is comparable to the Vineland-II but being shorter, the Italian DABS requires less time to administer.

Straight from the horse's mouth: Increasing self-report in mental health assessment in individuals with intellectual disability.

BACKGROUND: Mental health conditions are common among individuals with intellectual disability. Under recognition of mental health disorders leading to unmet treatment needs is common in this population. This article addresses one major contributing factor, the lack of cognitively accessible self-report measures for individuals with intellectual disability. METHOD: In this literature-informed overview of the state of the field, we discuss the need for, and complexities of, including individuals with intellectual disability in mental health assessments. RESULTS: With appropriate supports, many individuals with intellectual disability can respond to mental health questions. We discuss evidence-based strategies to make mental health assessments more accessible. CONCLUSION: We highlight the need to engage individuals with intellectual disability to provide first-hand information about their health and well-being. New instruments and research procedures should be developed in partnership with individuals with intellectual disability. Self-report may be essential to advancing the science of mental health research.

Empirically supported psychological treatments: The challenges of comorbid psychiatric and behavioral disorders in people with intellectual disability.

This paper reviews the current state of knowledge on psychological interventions with empirical evidence of efficacy in treating common psychiatric and behavioral disorders in people with intellectual disability (ID) at all stages of their life. We begin with a brief presentation of what is meant by psychiatric and behavioral disorders in this population, along with an explanation of some of the factors that contribute to the increased psychosocial vulnerability of this group to present with these problems. We then conduct a review of empirically supported psychological therapies used to treat psychiatric and behavioral disorders in people with ID. The review is structured around the three generations of therapies: Applied behavior analysis (e.g., positive behavior support), cognitive behavioral therapies (e.g., mindfulness-based cognitive therapy), and contextual therapies (e.g., dialectical behavior therapy). We conclude with some recommendations for professional practice in the fields of ID and psychiatry.

Invisible populations: Who is missing from research in intellectual disability?

It is estimated that approximately 41% of adults with intellectual and developmental disability (IDD) are served through the developmental disabilities (DD) system in the US. The remaining 59% include individuals who meet diagnostic criteria but are not actively receiving paid services or may not be known to the DD system. Scholars have referred to this group as the "hidden majority." Very little is known about the health and well-being of these adults. It remains to be seen if the hidden majority is comparably susceptible to mental health difficulties, given how little is known about this population by DD systems. The purpose of this manuscript is to highlight where one may identify individuals belonging to this hidden population and how researchers might effectively recruit from this group so as to ensure more representative samples of all people with IDD.

Urbanicity, Health, and Access to Services for People With Intellectual Disability and Developmental Disabilities.

Previous research suggests that residence in non-metropolitan areas is associated with lower access to preventive care and poorer health. However, this research has been largely restricted to the general population, despite data demonstrating disparities in health status and access to healthcare services for people with intellectual and developmental disabilities (IDD). The current study examined several hypotheses involving the effects of rurality on access to preventive healthcare and services and health status: (1) individuals in non-metropolitan areas will have lower preventive healthcare utilization, (2) individuals in non-metropolitan areas will have poorer health outcomes, and (3) individuals in non-metropolitan areas will have poorer access to services. The current study uses data from the National Core Indicators (NCI) Adult Consumer Survey 2015-2016: Final Report which included Rural-Urban Commuting Area (RUCA) Codes for the first time. Results of logistic regression suggest that, despite connection to disability services, the health status and access to preventive healthcare services of people with IDD generally follow patterns similar to those observed in the general population. Namely, people with IDD in non-metropolitan areas have decreased access to healthcare services, preventive healthcare utilization, and health status. Despite some exceptions, it appears effects of rurality are not completely mitigated by current state and federal efforts.

Systematic Review: Recommendations for Rehabilitation in ASD and ID From Clinical Practice Guidelines.

OBJECTIVE: To identify and summarize clinical practice guidelines for autism spectrum disorder (ASD) and intellectual disability (ID) for the Package of Interventions for Rehabilitation for the World Health Organization (WHO). DATA SOURCES: Academic databases, Google Scholar, guideline databases, and professional society websites were searched using the general criteria "ASD/ID" AND "rehabilitation" AND "guideline," restricted to English-only guidelines. STUDY SELECTION: Work group members independently screened titles and abstracts (1952 ASD; 1027 ID) and excluded articles if not (1) a guideline; (2) about rehabilitation; (3) published since 2008; or (4) about ASD/ID. Full-text screening (29 ASD; 5 ID) involved 3 additional exclusion criteria: (1) contained conflict of interest; (2) lacked information on strength of recommendation; or (3) failed the Appraisal of Guidelines for Research and Evaluation II instrument. Six guidelines (4 ASD: 2 on youth, 1 on adults, 1 on all ages; 2 ID: 1 on challenging behaviors, 1 on mental health) resulted. DATA EXTRACTION: Work group members extracted 524 recommendations (386 ASD; 138 ID) from the guidelines including the level of evidence, diagnostic and age group, recommendation type (assessment, intervention, service), target, and valence. DATA SYNTHESIS: Of the 270 intervention recommendations (212 ASD; 58 ID), only 36 for ASD and 47 for ID were empirically based. Most comprised biomedical (23%), pharmacologic (29%), and psychosocial (21%) interventions for ASD and behavioral (14%), pharmacologic (29%), and psychological (14%) interventions for ID. Intervention recommendations primarily targeted coexisting conditions (56% ASD; 93% ID), whereas core symptoms received much less attention (26% ASD). CONCLUSIONS: Clinical practice guidelines reviewed for ASD and ID primarily contained recommendations based on expert opinion, with the plurality of recommendations relating to pharmacologic treatment. Vital next steps include identifying relevant interventions for inclusion in the WHO Package and continuing to conduct rigorous intervention research, particularly on core symptoms of these conditions, to extend recommendations for high-quality guidelines.

Ongoing Transformation in the Field of Intellectual and Developmental Disabilities: Taking Action for Future Progress.

There has been a significant transformation in the field of intellectual and developmental disabilities (IDD) over the last 5 decades. Although this transformation has profoundly influenced multiple stakeholders, the field is currently at a critical juncture and facing a number of social and political challenges. Given the relevance of the question, "where is the field of IDD and where do we go," the present article describes the field's transformation, and suggests future action steps to facilitate and sustain the transformation. The seven action steps discussed in the article relate to using precise terminology, incorporating a functional and holistic approach to IDD, embracing the supports model and evidence-based practices, implementing outcome evaluation, empowering individuals and families, understanding better the multidimensional properties of context, and incorporating an explicit notion of professional responsibility.

Factors affecting the relationship between adaptive behavior and challenging behaviors in individuals with intellectual disability and co-occurring disorders.

Previous studies have reported an inverse relationship between adaptive behavior and challenging behaviors in individuals with ID. However, it is unclear which characteristics might influence this relationship in individuals with ID and co-occurring conditions. We found a positive correlation between adaptive behavior (Vineland-II) and challenging behaviors (Nisonger Child Behavior Rating Form) in a study of 105 individuals who presented with mostly severe to profound ID and comorbid physical and mental health conditions. These results might be the consequence of the individual participant characteristics. Therefore, participants were separated out into two groups representing the top (n = 24) and bottom quartiles (n = 28) for presence of challenging behaviors. The participants with the highest levels of challenging behaviors had higher levels of adaptive behavior, higher frequency of intermittent explosive/conduct disorder, but lower frequency of epilepsy and cerebral palsy. All participants with the highest levels of challenging behaviors lived in an institutional setting; whereas, those with the lowest level of challenging behaviors lived in either an institutional setting or with their family. In participants with severe/profound ID and multiple co-occurring disorders, a minimum level of adaptive behavior seems to be necessary for the expression of challenging behaviors.

Healthcare services utilization among people with intellectual disability and comparison with the general population.

BACKGROUND: Studies have reported unmet health needs in individuals with intellectual disability (ID). This study illustrated and analysed patterns of healthcare services utilization among people with intellectual disability and compared their use to that of the general population. METHOD: Participants (N = 791, aged 15-82) were mainly recruited through government-financed agencies specializing in services for people with intellectual disabilities in Québec, Canada. Comparisons were possible by using health administrative data. RESULTS: Some services were more used by people with intellectual disability than the general population (general medicine, psychiatry, PSA blood tests), and others were accessed at significantly lower frequencies (optometry, physiotherapy, Pap tests). Similar rates were found for mammography, dentistry and psychology. Inequities were more salient for individuals who had more severe levels of intellectual disability. CONCLUSIONS: Our findings support that the population with intellectual disability would benefit from policies and practices aimed at enhancing the access to healthcare services.