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Intellectually and Developmentally Disabled Children and Adults: Assessment and Treatment

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A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Global Health".

Deadline for manuscript submissions: closed (31 January 2021) | Viewed by 42763

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Special Issue Editors

Prof. Dr. Benito Arias

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Leading Guest Editor

Universidad de Valladolid, Valladolid, Spain
Interests: psychological assessment; data analysis; developmental disabilities; measurement; quantitative methodology; intellectual disability; adaptive behavior

Prof. Dr. Miguel Angel Verdugo

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Assistant Guest Editor

University of Salamanca, Spain
Interests: assessment; developmental disabilities; inclusive education; neurodevelopmental disorders; special education; evidence based practice; intellectual disabilities; critical disability studies; organizational change

Prof. Dr. Cristina Jenaro

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Assistant Guest Editor

Universidad de Salamanca, Spain
Interests: psychological assessment; treatment; clinical assessment; psychological testing; developmental disabilities; inclusive education; clinical psychology; rehabilitation ; health psychology

Dr. Victor Arias

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Assistant Guest Editor

Universidad de Salamanca, Salamanca, Spain
Interests: statistical analysis; quantitative data analysis; measurement; quantitative methodology; structural equation modeling; research statistics; psychometrics; scale development; applied psychometrics; item response theory; quality of life research; rasch; classical test theory

Special Issue Information

Dear Colleagues,

The International Journal of Environmental Research and Public Health (IJERPH) welcomes submissions for a Special Issue focused on “Intellectually and Developmentally Disabled Children and Adults: Assessment and Treatment”. IJERPH is a multidisciplinary open access journal with fast peer review/publication process, great visibility, and high impact factor (JCR 2018 IF = 2.468; Q1 in SSCI, ‘Public, Environmental & Occupational Health’).

The phenomenon of intellectual and developmental disabilities is complex and heterogeneous. Individuals with IDD present a wide range of abilities, behaviors, and roles within communities and society. As is well known, the etiology of IDD includes multiple causes, such as genetic disorders, and numerous pre-, peri-, and postnatal variables, such as brain trauma, exposure to toxins, poor environmental stimulation, and adverse family interactions, among others. A conclusive etiological explanation remains elusive for most individuals. Despite this high level of heterogeneity, there are three core features that indicate the presence of ID: the person must present (a) a deficit in intellectual functioning, as determined by a substantive subaverage IQ on individually administered intelligence tests, (b) a deficit in adaptive behavior, and (c) these deficits must have originated during the developmental period (usually, before 18 years). Persons with IDD are at higher risk for a number of adverse outcomes, such as social rejection, stigmatization, behavioral and emotional disorders, anxiety, depression, and other psychiatric conditions. Care should be taken not to inappropriately ascribe psychiatric symptoms to IDD itself (“diagnostic overshadowing”).

In recent years, diagnostic and treatment systems of IDD have emphasized the supports that people with IDD require to adequately function in their communities and to achieve their fullest potential. Many efforts have been endeavored to develop accurate, valid and reliable assessment and diagnostic instruments, as well as to design and apply efficient and evidence-based treatment strategies, policies and programs. However, there are still many research gaps around issues such as the psychometric adequacy of assessment and diagnostic systems, what are the most useful strategies for determining the effectiveness of treatment programs, the prevalence of dual diagnosis, the most effective ways of dealing with conduct disorders or challenging behaviors, how to properly diagnose psychiatric disorders in this population, or how to assess and implement support systems, among others.

We invite researchers to send their works (such as empirical studies, literature reviews, theoretical articles, methodological articles, or case studies) on the above mentioned topics, to be considered for publication in this Special Issue.

The deadline for submitting manuscripts (which will be reviewed by peers) is January 31, 2021.

Prof. Dr. Benito Arias
Prof. Dr. Miguel Angel Verdugo
Prof. Cristina Jenaro
Dr. Victor Arias
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

intellectual / developmental disability
assessment
context-based interventions
adaptive behavior
dual diagnosis
supports paradigm
healthcare and social services
inclusion
self-determination
diagnostic overshadowing
policies and programs

Published Papers (10 papers)

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Research

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19 pages, 948 KiB

Open AccessArticle

Community Living, Intellectual Disability and Extensive Support Needs: A Rights-Based Approach to Assessment and Intervention

by Laura Esteban, Patricia Navas, Miguel Ángel Verdugo and Víctor B. Arias

Int. J. Environ. Res. Public Health 2021, 18(6), 3175; https://doi.org/10.3390/ijerph18063175 - 19 Mar 2021

Cited by 10 | Viewed by 3251

Abstract

People with intellectual disability (ID) and extensive support needs experience poorer quality of life than their peers whose disability is not as severe. Many of them live in residential settings that limit community participation and prevent them from exercising control over their lives. This work analyzes the extent to which professional practices are aimed at promoting the right to community living for people with ID and extensive support needs, as well as the rights that are particularly linked to it, such as the right to habilitation and rehabilitation and the right to privacy. A specific questionnaire was designed and administered to 729 adults with intellectual disability (M = 37.05; DT = 12.79) living in different settings (family home, residential facilities and group homes). Measurement and structural models were estimated using exploratory structural equation modeling. Results obtained reveal that people with extensive support needs receive less support in terms of guaranteeing their right to independent living and privacy, especially when they live in disability-related services. This study highlights the need to implement and monitor, using valid and reliable indicators, mesosystem strategies that guarantee the right to live and participate in the community, especially for individuals with ID and extensive support needs. Full article

(This article belongs to the Special Issue Intellectually and Developmentally Disabled Children and Adults: Assessment and Treatment)

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16 pages, 1178 KiB

Open AccessFeature PaperArticle

Evidences of an Implemented Training Program in Consensual and Responsible Sexual Relations for People with Intellectual Disabilities

by Belén Gutiérrez-Bermejo, Noelia Flores, Pedro J. Amor and Cristina Jenaro

Int. J. Environ. Res. Public Health 2021, 18(5), 2323; https://doi.org/10.3390/ijerph18052323 - 26 Feb 2021

Cited by 9 | Viewed by 2507

Abstract

(1) Background: While there is a growing awareness of the rights of individuals with intellectual disabilities, very limited progress has been made in supporting these people to create and maintain intimate and personal relationships. (2) Methods: This paper reports the results from a program aimed at promoting responsible and consensual sexual relations of adults with intellectual disabilities. Of the 44 participants, 31.8% were women and 68.2% were men aged 22 to 67 years. Pre and post measurements regarding the attitudes toward sexual relations were taken, and difficulty and discrimination indexes were calculated. (3) Results: Statistically significant improvements were identified in the overall measurements, as were they for the domains of privacy, safety, and respect. The difficulty index changed from 0.67 to 0.79 in a pre-post assessment, denoting more positive attitudes. This and other results support the relevance and usefulness of the intervention program and encourage further intervention efforts. Full article

(This article belongs to the Special Issue Intellectually and Developmentally Disabled Children and Adults: Assessment and Treatment)

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16 pages, 456 KiB

Open AccessArticle

Assessment of Occupational Health and Job Satisfaction in Workers with Intellectual Disability: A Job Demands–Resources Perspective

by Noelia Flores, Carmen Moret-Tatay, Belén Gutiérrez-Bermejo, Andrea Vázquez and Cristina Jenaro

Int. J. Environ. Res. Public Health 2021, 18(4), 2072; https://doi.org/10.3390/ijerph18042072 - 20 Feb 2021

Cited by 11 | Viewed by 3844

Abstract

In the contexts where people with intellectual disability work, there are factors that determine their job satisfaction. The objective of this study was to test the adequacy of the central assumptions of the Job Demands–Resources (JD-R) theory in workers with intellectual disability employed in different work alternatives. Data from 362 workers in sheltered workshops and 192 workers in supported employment were utilized. The model was contrasted using a structural equation model and a multi-group analysis. The results supported the suitability of the model and confirmed that job demands and job resources evoke two relatively independent processes such as health impairment and motivational process. The multi-group analysis confirmed the invariance of the model between the two work alternatives. Thus, the JD-R model offers a useful framework to explain the job satisfaction of workers with intellectual disability. Implications for the improvement of personal and job results are discussed. Full article

(This article belongs to the Special Issue Intellectually and Developmentally Disabled Children and Adults: Assessment and Treatment)

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10 pages, 1527 KiB

Open AccessArticle

Validity of DSM-5 Oppositional Defiant Disorder Symptoms in Children with Intellectual Disability

by Victor B. Arias, Virginia Aguayo and Patricia Navas

Int. J. Environ. Res. Public Health 2021, 18(4), 1977; https://doi.org/10.3390/ijerph18041977 - 18 Feb 2021

Cited by 3 | Viewed by 4580

Abstract

Oppositional defiant disorder (ODD) is one of the most frequently diagnosed disorders in children with intellectual disabilities (ID). However, the high variability of results in prevalence studies suggests problems that should be investigated further, such as the possible overlap between some ODD symptoms and challenging behaviors that are especially prevalent in children with ID. The study aimed to investigate whether there are differences in the functioning of ODD symptoms between children with (n = 189) and without (n = 474) intellectual disabilities. To do so, we analyzed the extent to which parental ratings on DSM-5 ODD symptoms were metrically invariant between groups using models based on item response theory. The results indicated that two symptoms were non-invariant, with degrees of bias ranging from moderately high (“annoys others on purpose”) to moderately low (“argues with adults”). Caution is advised in the use of these symptoms for the assessment and diagnosis of ODD in children with ID. Once the bias was controlled, the measurement model suggested prevalences of 8.4% (children with ID) and 3% (typically developing children). Theoretical and practical implications are discussed. Full article

(This article belongs to the Special Issue Intellectually and Developmentally Disabled Children and Adults: Assessment and Treatment)

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19 pages, 804 KiB

Open AccessArticle

Predictive Factors of Self-Reported Quality of Life in Acquired Brain Injury: One-Year Follow-Up

by Alba Aza, Miguel Á. Verdugo, María Begoña Orgaz, Antonio M. Amor and María Fernández

Int. J. Environ. Res. Public Health 2021, 18(3), 927; https://doi.org/10.3390/ijerph18030927 - 21 Jan 2021

Cited by 4 | Viewed by 2456

Abstract

Background: The sequelae and disabilities that follow an acquired brain injury (ABI) may negatively affect quality of life (QoL). The main objective of the study is to describe the QoL after an ABI and identify the predictors of a better QoL. Methods: Prospective cohort study with follow-up measurement after one-year. The sample comprised 203 adults with ABIs (64% male) aged 18–86 years (M = 53.01, SD = 14.44). Stroke was the main etiology of the injury (55.7%), followed by a TBI (32.8%), and the average time since injury was 8 years (M = 8.25, SD = 7.83, range = 0.5–47.5). Patients assessed their QoL through the scale Calidad de Vida en Daño Cerebral (CAVIDACE self-reported version; “quality of life in brain injury” in English), an ABI-specific tool based on the eight-domain QoL model. Other variables measured were: depression, self-awareness, community integration, resilience, and social support at baseline and one-year follow-up. Results: The studied factors showed few significant changes over time. The analyses showed statistically significant differences in QoL scores in several sociodemographic (age, civil status, education, legal capacity, and dependency), injury-related (time, location, and comorbidity), rehabilitation, and personal-social variables (self-awareness, depression, social support, resilience, and community integration). The levels of dependency, depression, and satisfaction with social support were independent predictors of the total QoL score one-year follow-up. Conclusions: QoL after ABI depends on multiple elements that must be considered. There are factors such as satisfaction with social support, depression, community integration, and resilience that must be monitored throughout the rehabilitation process. Full article

(This article belongs to the Special Issue Intellectually and Developmentally Disabled Children and Adults: Assessment and Treatment)

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20 pages, 2072 KiB

Open AccessArticle

Examining the Suitability of the List of Indicators Describing Age-Related Typical Support Needs

by Antonio M. Amor, Miguel A. Verdugo, Benito Arias, María Fernández and Alba Aza

Int. J. Environ. Res. Public Health 2021, 18(2), 764; https://doi.org/10.3390/ijerph18020764 - 18 Jan 2021

Cited by 5 | Viewed by 1896

Abstract

The list of indicators is a form of training material used for the Supports Intensity Scale—Children’s version (SIS-C). It is aimed at helping interviewers distinguishing between extraordinary and age-related typical support needs in children with intellectual and developmental disabilities (IDD) when implementing the SIS-C, and thus improve supports planning. The aim of this study is to adapt and test the list of indicators’ content validity and rating scale’s functioning in Spain. A total of 222 general education teachers reported their agreement with each indicator description using a 5-point rating scale. A total of 353 of 366 indicators showed evidence of content validity, whereas analyses on the rating scale highlighted the necessity of subsuming one of the scale categories within another. The need for developing research-based training materials to develop training programs on the use of the SIS-C to support decision-making concerning supports planning with students with IDD, the relevance of using the latest methodological approaches available when required, and future lines of research are discussed. Full article

(This article belongs to the Special Issue Intellectually and Developmentally Disabled Children and Adults: Assessment and Treatment)

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17 pages, 745 KiB

Open AccessArticle

Parental Stress and Family Quality of Life: Surveying Family Members of Persons with Intellectual Disabilities

by Cristina Jenaro, Noelia Flores, Belén Gutiérrez-Bermejo, Vanessa Vega, Carmen Pérez and Maribel Cruz

Int. J. Environ. Res. Public Health 2020, 17(23), 9007; https://doi.org/10.3390/ijerph17239007 - 03 Dec 2020

Cited by 18 | Viewed by 4318

Abstract

(1) Background. This study assesses the quality of life in families with a member with an intellectual disability using the Family Adjustment and Adaptation Response framework. (2) Methods. The study included 515 Spanish participants whose family members with disabilities range in age from infancy to adulthood. We hypothesized that it is possible to predict parenting stress by paying attention to the meaning families give to themselves and their circumstances while controlling for the impact of other variables such as family capabilities and characteristics of the family member with disabilities. We used the Beach Center Family Quality of Life Scale and the section on Exceptional needs of medical and behavioral support from the Supports Intensity Scale, together with other potential predictors. The subscale on parental stress from the Parenting Stress Index–Short Form was utilized as a criterion measure. (3) Results. Hierarchical multiple regression analysis revealed that 49% of parental stress was predicted by dysfunctional interaction, difficult behaviors, low emotional wellbeing, poor family interaction, as well as kinship as parents, and the severity of both the medical needs and intellectual disability. (4) Conclusions. The stress experienced by those families is mostly predicted by the meaning they give to themselves and their circumstances. Implications of these findings for service delivery are discussed. Full article

(This article belongs to the Special Issue Intellectually and Developmentally Disabled Children and Adults: Assessment and Treatment)

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Review

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17 pages, 1805 KiB

Open AccessReview

Prevalence of Sexual Abuse in Adults with Intellectual Disability: Systematic Review and Meta-Analysis

by Raluca Tomsa, Smaranda Gutu, Daniel Cojocaru, Belén Gutiérrez-Bermejo, Noelia Flores and Cristina Jenaro

Int. J. Environ. Res. Public Health 2021, 18(4), 1980; https://doi.org/10.3390/ijerph18041980 - 18 Feb 2021

Cited by 43 | Viewed by 8247

Abstract

This study presents the results of a systematic review on the prevalence of sexual abuse experienced in adulthood by individuals with intellectual disability. An electronic and manual search of academic journals was performed on four databases via EBSCO Host: Academic Search Complete, PsycINFO, Medline, CINAHL Full-Text. In addition, PubMed, ProQuest, and Web of Science (core collection) were searched. After an initial selection of 1037 documents, 25 articles remained for quantitative synthesis. The combined prevalence of sexual abuse in adults with intellectual disability was 32.9% (95% CI: 22.7–43.0) and sensitivity analysis revealed that the prevalence was not outweighed by a single study. Overall, the United Kingdom had the highest prevalence (r = 34.1%), and the USA had the lowest (r = 15.2%). The overall prevalence in females was lower (r = 31.8%) than that in males (r = 39.9%). Subgroup analyses revealed that prevalence of sexual abuse was higher in institutionalized individuals. The most prevalent profile of abuser is of a peer with intellectual disability. Prevalence increases from mild to severe levels of intellectual disability and decreases in profound levels. It is also more prevalent when the informant is the individual with intellectual disability than when someone else reports abuse. In sum, one in three adults with intellectual disability suffers sexual abuse in adulthood. Special attention should be paid for early detection and intervention in high risk situations. Full article

(This article belongs to the Special Issue Intellectually and Developmentally Disabled Children and Adults: Assessment and Treatment)

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12 pages, 2151 KiB

Open AccessReview

Demographic Assessment of Down Syndrome: A Systematic Review

by Agustín Huete-García and Mónica Otaola-Barranquero

Int. J. Environ. Res. Public Health 2021, 18(1), 352; https://doi.org/10.3390/ijerph18010352 - 05 Jan 2021

Cited by 15 | Viewed by 5889

Abstract

The objective of this study is to assess the evidence about the demographic transformation of the Down Syndrome population, with a specific focus on prenatal testing, and to identify sources frequently used for demographic assessment of Down Syndrome in the world. We reviewed existing studies on demographic transformations in the population with Down Syndrome, specifically birthrate indicators, under the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Statement. The searches were made in Medline (via EBSCO Host), Academic Search Complete (via EBSCO Host), PsycINFO (via EBSCO Host), Web of Science (Core Collection), Public Health Database (via ProQuest), and The Cochrane Library. The terms were developed through Medical Subject Headings (MESH) and American Psycological Asociation Thesaurus of Psychological Index Terms (APA). Full texts were reviewed if information was given regarding location and birthrate for a range of three years or more, and if the first and last year considered was within 1960 and 2019. We found 22 references with a period of study between 1960 and 2019 following the global spread of prenatal testing for Down Syndrome. We found a consistent association between prenatal diagnosis and birthrate, enough to explain the significant fall in the prevalence of Down Syndrome, a somewhat rising incidence of Down Syndrome related to increased maternal age and extension of fertility services in healthcare systems, a generalized use of specific congenital birth defect registries as the primary source of data, and an unclear influence of socio-cultural and territorial variables. Our findings can inform research, policy, and practice to improve the reproductive health and quality of life of the population with Down Syndrome. Full article

(This article belongs to the Special Issue Intellectually and Developmentally Disabled Children and Adults: Assessment and Treatment)

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26 pages, 671 KiB

Open AccessReview

A Systematic Review of the Assessment of Support Needs in People with Intellectual and Developmental Disabilities

by Miguel A. Verdugo, Virginia Aguayo, Victor B. Arias and Laura García-Domínguez

Int. J. Environ. Res. Public Health 2020, 17(24), 9494; https://doi.org/10.3390/ijerph17249494 - 18 Dec 2020

Cited by 16 | Viewed by 4441

Abstract

An evaluation of support needs is fundamental to the provision of services to people with intellectual and developmental disabilities. Services should be organized by considering the support that people need to improve their quality of life and enforce their rights as citizens. This systematic review is conducted to analyze the rigor and usefulness of the available standardized tools for assessing support needs, as well as the uses of their results. Several databases were consulted, including Web of Sciences, Scopus, PubMed, ProQuest Central, PsycInfo, ERIC, and CINAHL, and the 86 documents that met the review criteria were organized into four sections: (a) measurement tools, (b) descriptive/correlational studies, (c) predictive studies, and (d) interventions. The results showed that age, level of intellectual disability, adaptive behavior skills, the number and type of associated disabilities, and medical and behavioral needs affected the support needs of people with disabilities. Quality of life outcomes have been predicted by the individual’s support needs, explaining a significant percentage of their variability. The findings are useful in guiding assessments and planning interventions. Further research should address the effectiveness of specific support strategies and the development of social policies and indicators for inclusion that involve assessing support needs. Full article

(This article belongs to the Special Issue Intellectually and Developmentally Disabled Children and Adults: Assessment and Treatment)

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