The practical application of a meta-analysis of deinstitutionalization : adaptive behaviour outcomes and the piloting of a transitional questionnaire for adults with intellectual disabilities

This investigation examined the effects of de institutionalization on the adaptive behaviour and adjustment of adults with intellectual disabilities (ID). In study 1, a meta-analysis was conducted with 23 studies on deinstitutionalization adaptive behaviour outcomes. Deinstitutionalization was associated with modest improvements in adaptive behaviour however outcomes varied across adaptive behaviour domains and other substantive variables. Clinical and service implications of these results were explicated. Noting the trends from the meta-analysis, study 2 used this information in refining and piloting an Agency Transition Survey used to evaluate community transitions for persons with ID. Information derived from the survey was found to be valuable and adequate for the effective evaluation of transitional success. Potential applications of the survey and meta-analysis results were illustrated.

An analysis of the systemic aspects of rights training for people with intellectual disabilities

Individuals with intellectual disabilities (ID) as a group have been subject to abuse. Individuals with ID need to be made aware of their rights. The 3Rs: Rights, Respect and Responsibility Human Rights Project is promoting rights awareness in individuals with ID, their caregivers and family members. To be effeCtive, abuse prevention must include support from the whole organization and its processes. This research evaluated the impact of the 3Rs initiative on the organization. It focused particularly on descriptions of organizational change perceived by full-time staff and managers in response to the initiation of the 3Rs Project. Behavioural interviews were conducted and a thematic analysis was used to describe changes in the organizational culture and behavioural mechanisms maintaining these changes. Systemic barriers to change were also explored. The results indicate that the Association is effectively implementing and supporting the rights-based philosophy.

Deinstitutionalization and community inclusion of individuals with intellectual disabilities in Ontario : a case analysis

In the last few decades, there have been significant changes in the way people with intellectual disabilities (ID) live in many countries around the world. Large isolated institutions have been replaced by community-based housing. This study examined the deinstitutionalization process in Ontario and it's effects on the lives of three individuals with ID. A case analysis approach was used allowing for in depth evaluation of the quality of life of these participants following their discharge with a focus on family involvement, community engagement, and choice making. A discrepancy analysis between the Essential Elements Plan (EEP), constructed when they were entering the community placement, and the current living arrangements was also done. The results of this study suggested that with community living comes improvements in family interactions, community engagement, and decision-making. However, these improvements were found to be minimal. Also, little discrepancy was found between the EEPs and their actual placements.

Teaching persons with intellectual disabilities and limited receptive and expressive communication how to recognize and assert their human rights

Persons with intellectual disabilities (ID) are far more likely to be abused than the general population, but there is little research on teaching people with ID about their rights. The goal of this study was to teach four participants with ID and limited communication abilities about their human rights by training them on specific rights topics. The training program included icebreaker activities, instruction on rights concepts, watching and answering questions about videotaped scenarios of rights restrictions, watching and answering questions about role pl ay scenarios of rights restrictions, and responding to brief, low risk in situ rights restrictions imposed by the researchers. Participant performance did not improve significantly or consistently from baseline to training on the questions asked about the videotaped or the role play scenarios, but two of three participants demonstrated defmite improvements in responding to in situ rights restrictions.

Deinstitutionalization and its Effects on Social Inclusion, Choice-Making, Adaptive and Maladaptive Behavior for Individuals with Intellectual Disabilities: Case Studies Analysis

In the past three decades institutions for persons with intellectual disabilities (ID) have been downsizing and closing in Ontario, Canada. This trend is reflective of the changes that have occurred in society. As of March 2009 the last institution operated by the Ontario government for persons with ID closed, placing the remaining approximately 1000 persons into the community. The current study was an analysis of part of one study in a four-study research project, called the Facilities Initiative Study, to explore the impact of the closures on the lives of individuals who have been reintegrated into community settings. The goal of the current case study analysis was to describe the impact of changes in social inclusion, choice-making/autonomy, and adaptive/maladaptive functioning of four individuals prior to and following transition to the community. The results suggested that, in most cases, community integration was related to more social inclusion opportunities and autonomy in choice-making, a wider range of adaptive behaviors and fewer maladaptive behaviors. In some cases, the evidence suggested that some of these indices of quality of life were not improving. Overall, the study found that the differences observed were unique to each of the individuals who participated in the case study analysis. Some generalized themes were generated that can be applied to future deinstitutionalization endeavors.

Motor perseveration during an A not B task in children with intellectual disabilities

Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq)

Short-Term Effects of the Use of Non-Rigid Tools for Postural Control by Adults with Intellectual Disabilities

Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq)

Short-Term Effects of the Use of Non-Rigid Tools for Postural Control by Adults with Intellectual Disabilities

We tested the short-term effects of a nonrigid tool, identified as an "anchor system" (e.g., ropes attached to varying weights resting on the floor), on the postural stabilization of blindfolded adults with and without intellectual disabilities (ID). Participants held a pair of anchors one in each hand, under three weight conditions (250 g, 500 g and 1,000 g), while they performed a restricted balance task (standing for 30 s on a balance beam placed on top of a force platform). These conditions were called anchor practice trials. Before and after the practice trials, a condition without anchors was tested. Control practice groups, who practiced blocks of trials without anchors, included individuals with and without ID. The anchor system improved subjects' balance during the standing task, for both groups. For the control groups, the performance of successive trials in the condition without the anchor system showed no improvement in postural stability. The individuals with intellectual disability, as well as their peers without ID, used the haptic cues of nonrigid tools (i.e., the anchor system) to stabilize their posture, and the short-term stabilizing effects appeared to result from their previous use of the anchor system.

Factors associated with high anticholinergic burden in aging adults with intellectual disabilities:a cross-sectional study

Background: Anticholinergic (AC) medications are associated with cognitive and functional decline in older people, with risk of adverse outcomes increasing with increasing AC exposure. Older people with intellectual disabilities are at increased risk of high AC exposure owing to higher prevalence of multimorbidity, particularly psychiatric morbidities. Objectives: The aims of this study were to determine individual’s AC exposure using the AC cognitive burden (ACB) scale, identify therapeutic classes contributing to burden and determine clinical and demographic factors associated with two levels of AC exposure (ACB score 1–4, ACB 5+). Methods: Cross-sectional (self-report/proxy report)medication data were drawn from Wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing, a study on ageing of 753nationally representative people with ID aged over40 randomly selected from the National Intellectual Disability Database. Medication data were available for 736 (98%). Each individual’s cumulative AC exposure was calculated using the ACB. Multinomiallogistic regression was performed identifying clinical and demographic factors associated with ACB score1–4, and ACB 5+. Results: In the eligible population of 736 participants(mean (±SD) age 54.1 (±8.8) years,55% female), 522(70.9%) were exposed to an ACB medicine (ACB 1+); 214 (29%) had an ACB score of 5+; mean total ACB score= 4.5 (±3.0). Antipsychotics accounted for35.6% of the cumulative ACB score. Age over 65yearswas associated with increased likelihood of both levels of AC exposure (ACB 1–4—adjusted OR 3.28; 95%CI 1.49–7.25, ACB 5+—adjusted OR 3.08; 95%CI1.21–7.63) and having a mental health condition(ACB 1–4—adjusted OR 9.79; 95%CI 5.63–17.02, ACB 5+—adjusted OR 23.74; 95%CI 12.29–45.83). Conclusions: Using a simple cumulative measure proved an effective means to capture total burden and established that AC exposure was high and associated with older age and mental health morbidity. This highlights need for comprehensive medication reviews for older people with intellectual disabilities.

Supporting Students with Intellectual Disabilities in Higher Education through Mentoring

Federal legislation is now making it possible for students with Intellectual Disabilities (ID) to enroll in university programs through inclusive transition models. The need for more knowledge in the workplace, in addition to newly acquired opportunities, draws students with ID to college campuses. With this increase of student in postsecondary education settings, it is necessary to examine the types of supports needed to ensure their success. Peer mentorship has been identified as a crucial aspect of support for academic and social development. This paper identifies the skills mentors use during their sessions and outlines challenges with mentoring partnerships in postsecondary transition programs. Data analysis revealed major themes related to inclusion, self-determination, and adaptive behavior skills.

Glasgow Psychosis Screening tool for use in adults with Intellectual Disabilities (GPS-ID): development and psychometric properties

Background: Prevalence of psychosis is known to be higher in adults with intellectual disabilities (ID) than in the general adult population. However, there have been no attempts to develop a psychosis screening tool specifically for the adult ID population. The present study describes the development and preliminary evaluation of a new measure, the Glasgow Psychosis Screening tool for use in Adults with Intellectual Disabilities (GPS-ID). Method: An item pool was generated following: 1) focus groups with adults with ID and psychosis, and their carers and/or workers; 2) expert input from clinicians. A draft scale was compiled and refined following expert feedback. The new scale, along with the Psychotic Symptom Rating Scales was administered to 20 adults with ID (10 with and 10 without psychosis) and their relative or carers. Results: The GPS-ID total score, self-report subscale and informant rating-subscale differentiated psychosis and non-psychosis groups. The tool had good internal consistency (Cronbach’s α=0.91), and a cut-off score ≥4 yielded high sensitivity (90%) and specificity (100%). The method of tool development supports face and content validity. Criterion validity was not supported. Conclusions: Preliminary investigation of the tool’s psychometric properties is positive, although further investigation is required. The tool is accessible to adults with mild to moderate ID and can be completed in 15-30 minutes. The GPS-ID is not a diagnostic tool, therefore any adult exceeding the cut-off score of ≥4 should receive further assessment.

Haptic Stabilization of Posture in Adults With Intellectual Disabilities Using a Nonrigid Tool

This study assessed the effects of haptic information on the postural control systems of individuals with intellectual disabilities (ID), through the use of a nonrigid tool that we call the ""anchor system"" (e.g., ropes attached to graduated weights that rest on the floor). Eleven participants with ID were asked to stand, blindfolded, on a balance beam placed at two heights (10 and 20 cm), for 30 s, while using the anchor system at two weights. The lighter anchor weight appeared to improve the individuals' balance in contrast to a control task condition; therefore, we concluded that haptic sensitivity was more significant in helping to orient the body than was the anchor's mechanical support alone.

An evaluative case study of a psychological skills training program for athletes with intellectual disabilities

The purpose was to develop an evaluative case study of six 3-hr sessions, spaced over 3 months, of psychological skills training (PST) provided to athletes with an intellectual disability who were training for the Basketball Australia State Championships. Participants were 7 males and 7 females, aged 15.8 to 27.1 years, with a receptive language level of 7 to 13.7 years, 2 female coaches, 2 psychologists, and I registered psychologist supervisor. Sessions focused specifically on stress management, with primary attention given to cue words, breathing techniques, and positive thinking. Findings, based on interviews and participant observations, revealed that all participants believed that the PST was appropriate and worthwhile.

Development of mavoglurant and its potential for the treatment of fragile X syndrome.

Introduction: Fragile X syndrome (FXS) is the most common inherited cause of intellectual disability. With no curative treatment available, current therapeutic approaches are aimed at symptom management. FXS is caused by silencing the FMR1 gene, which encodes FMRP; as loss of FMRP leads to the development of symptoms associated with FXS. Areas covered: In this evaluation, the authors examine the role of the metabotropic glutamate receptor 5 (mGluR5) in the pathophysiology of FXS, and its suitability as a target for rescuing the disease state. Furthermore, the authors review the evidence from preclinical studies of pharmacological interventions targeting mGluR5 in FXS. Lastly, the authors assess the findings from clinical studies in FXS, in particular the use of the Aberrant Behavior Checklist-Community Edition (ABC-C) and the recently developed ABC-C for FXS scale, as clinical endpoints to assess disease modification in this patient population. Expert opinion: There is cautious optimism for the successful treatment of the core behavioral and cognitive symptoms of FXS based on preclinical data in animal models and early studies in humans. However, the association between mGluR5-heightened responsiveness and the clinical phenotype in humans remains to be demonstrated. Many questions regarding the optimal treatment and outcome measures of FXS remain unanswered.

Mutations in Eml1 lead to ectopic progenitors and neuronal heterotopia in mouse and human.

Neuronal migration disorders such as lissencephaly and subcortical band heterotopia are associated with epilepsy and intellectual disability. DCX, PAFAH1B1 and TUBA1A are mutated in these disorders; however, corresponding mouse mutants do not show heterotopic neurons in the neocortex. In contrast, spontaneously arisen HeCo mice display this phenotype, and our study revealed that misplaced apical progenitors contribute to heterotopia formation. While HeCo neurons migrated at the same speed as wild type, abnormally distributed dividing progenitors were found throughout the cortical wall from embryonic day 13. We identified Eml1, encoding a microtubule-associated protein, as the gene mutated in HeCo mice. Full-length transcripts were lacking as a result of a retrotransposon insertion in an intron. Eml1 knockdown mimicked the HeCo progenitor phenotype and reexpression rescued it. We further found EML1 to be mutated in ribbon-like heterotopia in humans. Our data link abnormal spindle orientations, ectopic progenitors and severe heterotopia in mouse and human.