Intellectual Developmental Disabilities Research Articles

Chapter 9 - Intellectual disability

Intellectual disability (ID) or intellectual developmental disability (IDD) is one of the commonest neurodevelopmental disabilities worldwide and is known to affect 2% of the population of France or just over a million people. It is marked by a reduced ability to reason and understand abstract or complex information, which heavily restricts school learning and limits the individual's ability to adapt to daily life, including their transition to adulthood. Intellectual handicap or mental handicap results from an interaction between the individual vulnerability of a person with ID and their ecosystem, in other words, their family, and cultural and institutional environment, which can be a barrier or a facilitator. Identifying a child with an unusual developmental trajectory requires professionals to have a good understanding of psychomotor development. ID may be isolated but is very often intertwined with other neurodevelopmental disorders, including autism, motor or sensory difficulties (hearing, vision), serious sleep and eating disorders, and medical conditions such as epilepsy, as well as a wide variety of psychopathologic problems, including anxiety, depression, and emotional regulation disorders. There are many causes of ID. More than half of all cases are genetic in origin, and there are several hundreds of rare diseases about which little is known so far. The use of new genetic techniques (high-throughput sequencing) should reduce the number of people who are undiagnosed and give way to a comprehensive diagnostic approach based on clinical practice. A regular multidimensional evaluation of cognitive, educational, socioemotional, and adaptive skills throughout life provides a better understanding of how individuals with ID function and will contribute toward the planning of more appropriate strategies for learning, care, and support, leading to a better quality of life and participation in society.

The ‘parents’ choice’: the recent perceptual changes in special education law in israel and its implementation in the field

The Israeli educational system is dealing intensively for the last two decades in the assimilation of the inclusion approach of student with special needs (SwSN) in general education. The first part of the article presents the historical development of special education in Israel as a background to the presentation of the new amendment of Special Education Law – Amendment 11 (2018). The current stage of the Eleventh Amendment implementation aims to ensure the inclusion of SwSN in the general education by an allocation of budget for his needs according to a standard assessment of his functioning level, in addition to his disability. The SwSN parents’ will decide about their child placement according to the model of “The Parents’ Choice”, and the student’s budget will be transferred to the chosen educational framework according to the “Funding Follows the Child” principle. The second part of the article presents a case study of special education school in Israel for students with intellectual developmental disabilities that gradually assimilate the spirit of the law amendment from both aspects – standard assessment of the students functioning and parental partnership, as part of professional work processes carried out at school in Activities of Daily Living (ADL) field.

Caregiving of offspring with intellectual developmental disabilities in Israeli Jewish and Arab households: Financial and psychosocial differences

BackgroundThis research responds to the lack of evidence-based knowledge regarding the psychosocial and financial gaps among caregivers of children with intellectual disabilities living in Jewish and Arab households. It examines the financial gaps and explores whether caregivers’ social economic status and households’ affiliation (Jewish vs. Arab) can explain the psychosocial variables such as levels of stress, social participation types and rates, and use of public services. MethodOne hundred and twenty-five Jewish and Arab caregivers completed an income and expenditure survey, including out-of-pocket expenditures, a services use survey, a questionnaire regarding resources and stress levels, and a social participation scale. ResultsArab households are more likely to have a low socioeconomic status (SES) than Jewish ones, characterized by lower per capita income, less spending, fewer out-of-pocket expenditures, and less ability to deal with an unexpected expense. In respect to psychosocial measures, Arab caregivers report lower use of public services than Jewish caregivers and lean more toward contact with relatives and religious participation than do Jewish caregivers. Caregivers’ social economic status and households’ affiliation do not have any interaction effect on psychosocial variables. ConclusionsFindings are discussed regarding research and practice.

Pre-Vocational Readiness with Emphasis on Oral Language Skills in People with Intellectual Developmental Disabilities

Pre-Vocational Readiness with Emphasis on Oral Language Skills in People with Intellectual Developmental Disabilities

Acquiring social and cognitive skills in an intervention for Arab parents of children with intellectual developmental disability accompanied by behavioral conditions

AbstractObjectiveThe current study examined the efficacy of acquiring social and cognitive skills in an intervention for Arab parents of children with intellectual developmental disability (IDD) accompanied by behavioral conditionsMethodThe research sample included 50 Arab parents with a child aged 8–12 who has a minor IDD and attends a special education school within the Haifa district in Israel. Upon providing written consent, parents completed the Bloomquist questionnaire and self‐reported on their own and their child's behaviors across the 10 domains. Parents were then randomized to either the experimental or control group.ResultsThe cognitive‐behavioral intervention, which focused on fostering social and cognitive skills within the parent‐child dyad, yielded improvements in eight domains: parental stress, positive parental thinking, parental involvement/positive reinforcement, child's obedience to rules, child's social skills, child's ability to manage anger, and child's demonstration of independent learning. In contrast, no improvements were observed for control participants who engaged in an art therapy intervention, suggesting the unique efficacy of the intervention developed in the current study.ConclusionsIn line with prior studies in samples from Western cultures, the current work represents the first systematic examination of an intervention for parents of children with IDD in Arab society.

How using assistive technology for cognitive impairments improves the participation and self-determination of young adults with intellectual developmental disabilities.

In Norway, where all citizens are entitled to live in their own homes in their local communities, people with intellectual disabilities receive community-based home care services that aim to promote their ability to live on their own. In our study, we investigated how using an assistive device for cognitive impairment - namely, a memo planner (MP) - in community-based home care services affected the everyday lives of people with intellectual developmental disabilities (IDD). Our sample consisted of seven young adults with IDD and their support staff. Data were collected during field observations and group interviews and analysed via systematic text condensation. The findings illuminate how using an MP can structure the daily lives of young adults with IDD and afford them opportunities to participate in everyday activities. In this article, we discuss how using an MP shapes interactions between people with IDD and their support staff.

‘I feel valued’: the experience of social networking site engagement among people with intellectual and developmental disabilities in South Korea

Previous studies have shown that participation in social networking sites (SNSs) enhances users’ knowledge, social capital, and quality of life. However, people with intellectual developmental disabilities (PIDD) do not use SNSs to the same extent as the general population does. This study aimed to explore the experiences of those PIDD in South Korea who use social media. Data were collected through face-to-face interviews with 20 PIDD. The study participants reported benefits associated with the use of SNSs, which included enhanced social capital, self-confidence, and positive self-image. Participants also used SNSs to maintain friendships, initiate new relationships, and engage in self and community advocacy. Safety concerns were also reported by the participants. The study concluded that SNSs can be used as tools for promoting community inclusion and developing social capital for PIDD. However, the outcomes of using SNSs depend on the availability of support provided by one’s network. The absence of support may result in frustration and even exploitation. With effective support, SNSs become powerful tools that can be used by PIDD to combat social isolation through creating ample opportunities for social inclusion.

3.7 INSOMNIA IN YOUTH WITH INTELLECTUAL DEVELOPMENTAL DISORDER

Children and adolescents with intellectual developmental disability (IDD) experience insomnia, either transiently or persistently, at rates higher than the typically developing population. The sleep deprivation suffered by the parents is associated with family stress and lower quality of life, causing distress and often impairment in the youth with IDD. There is a rather broad differential diagnosis for the symptom of insomnia in this population, one often not considered by clinicians because they assume that sleep disturbance is to be expected with IDD.

3.5 PSYCHOSOCIAL TREATMENT FOR INDIVIDUALS WITH INTELLECTUAL DEVELOPMENTAL DISABILITY AND CO-OCCURRING PSYCHOPATHOLOGY: BEYOND APPLIED BEHAVIORAL ANALYSIS

The goals of this presentation are as follows: 1) to understand James Gross’ modal model of emotion regulation and the role that emotion regulation plays in psychopathology; 2) to understand the limitations of applied behavioral analysis (ABA) in treating co-occurring psychopathology in individuals with intellectual developmental disability (IDD); 3) to review the early outcomes of psychotherapeutic interventions in individuals with IDD; and 4) to learn about current clinical models being piloted and future research needs.

A Systematic Review of U.S. Studies on the Prevalence of Intellectual or Developmental Disabilities Since 2000.

This systematic review examined 14 U.S. studies published since 2000 reporting prevalence estimates for intellectual disability (ID) or developmental disability (DD). Prevalence rates for children were between 11.0 and 13.4 per 1,000 for ID and between 45.8 and 69.9 per 1,000 for DD using data from 2010 or later. A 2015 Ohio study of adults yielded a prevalence estimate of 41.0 per 1,000 for DD. The only study of ID in adults and the only study incorporating DD Act definitions used the 1994/1995 NHIS-D yielding prevalence estimates for ID and/or DD of 38.2 per 1,000 for children birth to 5 years, 31.7 for children 6 to 18 years, and 7.9 per 1,000 for adults. Notable differences in prevalence estimates by age and operational definition have important implications for public policy and research. Serious surveillance gaps limit our understanding of service utilization rates, unmet needs, and health and other outcomes for adults with ID or DD.

The contemporary view of intellectual and developmental disabilities: Implications for psychologists.

The field of intellectual and developmental disabilities (IDD) is currently experiencing a significant transformation that encompasses an integrated approach, especially regarding shared aspects such as a focus on the human and legal rights, the eligibility for services and supports, and an emphasis on individualized supports provided within inclusive community-based environments. Accompanying this transformation is the increased need of precision in both the operational definitions of IDD-related constructs, and the terminology used to describe the respective construct. the specialized literature was revised, and previous works on the subject by the authors were updated. This article provides psychologists with the current definition of intellectual disability, operational definitions of intellectual disability and developmental disabilities constructs and associated terminology, and the parameters of an integrated approach to disability. Implications for psychologists who are involved in diagnosis, classification, and planning supports for persons with intellectual or developmental disability are discussed.

Clinical capacity of Australian and New Zealand psychiatrists who work with people with intellectual and developmental disabilities

To describe the characteristics and clinical capacity of Australian and New Zealand psychiatrists working in intellectual and developmental disability mental health (IDDMH). Consultant psychiatrists (n=71) with an interest or expertise in IDDMH completed an online survey about their roles, experience and time spent in intellectual developmental disability (IDD)-related activities. Psychiatrists had worked in IDDMH for a median of 11.34 years and half (53.5%) reported expertise in the area. One-fifth of psychiatrists reported IDDMH as their main area of practice. The majority of respondents (85.1%) reported that they were working clinically with people with IDD. Respondents practicing clinically worked a median of 8 hours in clinical and 3 hours in non-clinical IDD-related work per week. Surveyed psychiatrists had considerable experience in IDDMH. However, their work in IDDMH represented a relatively small proportion of their overall work hours, and a minority of respondents were responsible for a large proportion of clinical work. Exploring ways to broaden capacity is crucial to ensuring the mental health needs of people with IDD are met.

Word reading, vocabulary, and mental health problems in adolescent girls and boys with intellectual and developmental disabilities

Reading difficulties are linked to several disadvantages in the general population. Less is known about correlates of reading difficulties in individuals with intellectual and severe developmental disabilities (IDD). Vocabulary and word reading were assessed in 112 adolescents with IDD, recruited from Special needs comprehensive schools in Sweden (grundsärskolor in Swedish). Proxy-ratings of mental health were collected from teachers and parents for a subset of the participants. Relationships between all measures were investigated. Reading and vocabulary were poorly developed in both groups and significantly associated. While mental health problems were common, there were no significant associations with word reading or with vocabulary knowledge. Thus, the study did not confirm an association between reading difficulties and mental health problems in adolescents with IDD. Still, the frequency of mental health problems and the low reading abilities point to the need for further intervention for adolescents with IDD.

Direct Support Professionals' Perspectives on Ambulatory Health Care Processes and Quality.

Direct support professionals (DSPs) frequently accompany persons with intellectual and other developmental disabilities (IDD) to their health care appointments and could offer valuable insights into potential target areas for health-care improvement. DSPs completed surveys assessing healthcare processes and quality immediately following 118 ambulatory health care encounters involving their patients with IDD. Although DSPs generally judged the quality of health care as good (44%) or excellent (52%), they also observed that physicians directed questions to the DSP that the patient could have answered in 22% of encounters, and noted that physicians failed to ask critical psychosocial information in 24% of encounters. Competency-based training of DSPs around health-care advocacy could significantly improve the quality of health care provided to persons with IDD.

KCNQ2 related early-onset epileptic encephalopathies in Chinese children.

To study the phenotype, genotype, treatment strategies, and short-term prognosis of Chinese children with KCNQ2 (potassium voltage-gated channel subfamily Q member 2) related early-onset epileptic encephalopathies (KCNQ2-EOEEs) in Southwest China. We used targeted next-generation sequencing (NGS) to identify KCNQ2 variants in Chinese patients with EOEEs. And patients with KCNQ2-EOEEs were confirmed after clinical and genetic analyses. We followed them in our cohort and analyzed their clinical data. 122 patients with EOEEs were registered from August 2015 to October 2017, and 78 underwent targeted NGS. Seven among them were confirmed to be caused by pathogenic KCNQ2 variants, 6 of that were de novo and 1 was inherited. The median seizure onset age of the 7 patients was 5days. Tonic-clonic and tonic seizures were the major seizure types; the electroencephalograms of all patients showed multifocal sharp waves initially. When new seizure types appeared in infancy, the most common type was epileptic spasm. At the last follow-up, seizures persisted in only one patient, and another patient had seizure recurrence. The identified pathogenic KCNQ2 variants introduced amino acid missense changes, or in one instance, frameshift variant, four of which have not been reported. Valproic acid (VPA) was effective as concomitanttreatment in three patients, and all patients had intellectual/developmental disabilities (IDDs). The KCNQ2 missense variant plays an important role in EOEE pathogenesis, and patients with KCNQ2-EOEEs mainly present with intractable seizures and IDDs. Moreover, VPA has potential as an effective therapeutic strategy.

Parents of Children with Significant Disabilities Describe Their Children’s Eating Habits: A Phenomenological Study

This qualitative phenomenological study, through interviews, aimed to understand the experiences of parents of children with significant multiple disabilities about their children’s eating habits. Review of literature indicated disparities in health between people with significant disabilities (SD) that include intellectual disabilities (ID), intellectual/developmental disabilities (IDD), or multiple impairments (MI) and people who are typically developing. People with significant disabilities are at a higher risk for obesity, future weight gain, underweight and/or malnutrition, adherence to a less-healthy diet, and problem behaviors during meal time. Semi-structured initial and follow-up interviews used general questions to gather data, which were subsequently coded and examined for themes across participants. Five themes emerged from the interviews and were compared to findings in the literature. This study included some unique characteristics: detailed descriptions of the children’s eating habits, family experiences around these habits, and what habits are going well for the children.

Building an Inclusive Post-Secondary Education Program for Young Adults with Intellectual Developmental Disability

Since the reauthorization of The Higher Education Opportunity Act (HEOA) in 2008, postsecondary programs that include individuals with intellectual developmental disability have seen a phenomenal increase. In 2015, a National Coordinating Center along with 52 Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) were created and funded through the U.S. Department of Education’s Office of Postsecondary Education. Currently, 267 programs are listed on the National Coordinating Center’s website. This is an increase in programs by 500% compared to the number in 2008. As more programs are created with many of them being grass roots initiatives, a basic framework to beginning and supporting these endeavors has been identified. The purpose of this article is to provide a framework to assist those interested in beginning their own inclusive program at an institution of higher education for students with intellectual developmental disability.

Introduction to the Special Issue: Educating People With Intellectual Disability and Related Developmental Disability

Abstract This special issue on educating children and adults with intellectual disability and related developmental disabilities (IDD) highlights critical developments in theory, research, and practice related to teaching, learning, and schooling. The six articles in this issue focus on (a) how social-ecological understanding of disability and the supports paradigm can be applied in educational settings and activities; (b) core practices, dispositions, and orientations needed by educators of students with extensive support needs; (c) the roles and responsibilities of professionals from different disciplines in educating secondary-age students with complex health care needs in general education classrooms; (d) experimental findings related to the efficacy of an approach to teaching academic skills that are simultaneously aligned with standards from the general education curriculum as well as functional skills; (e) predictors of inclusive course enrollments at institutions of higher education that offer programs for students with intellectual disability (ID); and (f) international perspectives on the challenges and benefits associated with establishing inclusive school communities.

The Effects of a Brief Touch Point Intervention for Children With Intellectual Developmental Disabilities (IDD)

This single-case study evaluated the impact of a brief touch point intervention on the ability of three third graders with intellectual developmental disabilities (IDD) to perform single-digit additions. A multiple-baseline (AB)-across-participants design was used to establish a cause-and-effect relationship between an intervention of 13 to 15 one-on-one teaching sessions and the expected outcome. Results indicated that all three students benefited from the treatment and showed increased performance of their addition skills over the course of the B Phase. By the end of the intervention, the average improvement rates varied from 164.50 to 420.00%. The findings are discussed in light of the existing literature, and conclusions are drawn.

Further delineation of the phenotype caused by loss of function mutations in PRMT7

PRMT7 encodes for an arginine methyltransferase that methylates arginine residues on various protein substrates and has been shown to play a role in various developmental processes. Mutations in PRMT7 have been recently shown to be implicated in a phenotype with intellectual disability, short stature and brachydactyly, and considered to be a phenocopy of pseudohypoparathyroidism. We report a patient with short stature, psychomotor delay, hearing loss and brachydactyly, for whom whole exome sequencing detected two mutations in PRMT7 and parental segregation studies detected biallelic mutation inheritance. Few patients with biallelic PRMT7 mutations have been reported so far in the literature. We report a new patient and review all reported cases to date to delineate the clinical manifestations that may help in diagnosis this disorder, known as Short Stature, Brachydactyly, Intellectual Developmental Disability, and Seizures syndrome, allowing appropriate management and genetic counselling.