Attainable Dreams and Harsh Realities: Housing for Individuals With Intellectual and Developmental Disabilities
Judy Verseghy, Lynda Atack, Janet Maher, Marilyn Herie, Matthew Poirier, Frances MacNeil, Dianne McCauley and Michelle Grimley
Individuals with intellectual and developmental disabilities (IDD) and their families are often faced with little to no choice regarding where and with whom the individual can live, and many remain living in the family home well into adulthood, despite this not being the desired arrangement for the individual or his or her ageing parents. To address this significant gap in access to housing, a research team inter-viewed individuals with IDD, family members, service providers, researchers, policy makers, students, and educators to determine what they saw as the most pressing and impactful concerns regarding the state of housing, and where to go in the future to ensure fair and accessible housing for this chronically undervalued population. Results indicate that significant positive change in the housing landscape could result from separating support from housing, including housing for individuals with IDD in the broader housing discussion, and increasing individualized funding opportunities to facilitate the development of personalized housing.
A Curriculum of Caring for People With Developmental Disabilities in Medical Education
Kerry Boyd, Erica Bridge, Meghan McConnell, Nick Kates and Karl Stobbe
The Curriculum of Caring for People with Developmental Disabilities provides experiential learning to improve the capacity of healthcare professionals to deliver person/family-centred care to people who live with intellectual and/or developmental disabilities (ID/DD). The purpose of this project was to explore the impact of the curriculum on medical students’ self-reported comfort, confidence, and competence in providing healthcare to the ID/DD population. The rationale for this study was to better understand how experiential learning (bringing people with lived experience into the medical school experience of trainees) might prepare future physicians to improve health care experiences for an under served population.
A three-phase experiential learning model: (1) early exposure, (2) clinical skills training, and (3) application in clinic settings, was introduced to undergraduate medical students (n = 28). (Phase 1 included 52 nursing students in an interdisciplinary half day program.) A pre-post survey was used to explore changes in self-reported comfort, confidence and competence on a five-point scale. A repeated measures ANOVA and subsequent post-hoc independent t-tests were used to analyze the data. Narrative comments complemented results at each phase.
Participants’ self-reported comfort, confidence, and competence increased significantly following Phase 1 (p < .001) and Phase 2 (p < .001). Post Phase 3 responses, were not significant. Student narrative comments were analyzed inductively using open-coding and overarching themes were coupled with participant quotes to ac-company the analysis in each phase.
This study adds to the literature on ID/DD curricula in healthcare education. The Curriculum of Caring influenced students’ perceived capacity to provide healthcare to the ID/DD population.
La perception de la réalité sociale d’adolescents vivant présentant un trouble du spectre de l’autisme
Ariane Leroux-Boudreault et Nathalie Poirier
L’adolescence est peu étudiée chez la population ayant un trouble du spectre de l’autisme (TSA) alors qu’elle s’avère être une période importante dans le dévelop-pement de l’identité, notamment par le biais des activités réalisées ainsi que par les relations avec les pairs. L’objectif de cet article est de présenter les résultats d’une étude exploratoire effectuée auprès de 14 adolescents ayant un TSA fréquentant une classe ordinaire. Des questions ont été posées dans le cadre d’une entrevue semi-structurée. Les thèmes abordés concernent les changements observés lors de leur entrée dans la puberté, leurs relations sociales ainsi que sur leurs loisirs. Bien que la plupart des répondants semblent être en mesure d’identifier les change-ments physiques et psychologiques vécus, ils ne sont pas tous en mesure de modi-fier leurs habitudes pour s’adapter aux changements générés par la puberté. Qui plus est, les adolescents rapportent tous des difficultés sur le plan des relations so-ciales, malgré leur fort désir d’entretenir des relations amicales. Il est alors observé que différents concepts, notamment ceux de l’amitié et de l’intimidation ne sont pas forcément bien intégrés pour ces jeunes adolescents présentant un TSA.
Social Reality: Perceptions of Adolescents Living With Autism Spectrum Dis-order
Adolescence is poorly studied for a population with autism spectrum disorder (ASD), although it is an important period for the development of identity, particu-larly through activities carried out as well as relationships with peers. The goal of this article is to present the findings of a study performed with 14 students with ASD who were integrated in a regular classroom. Though semi-structured inter-views, questions about their puberty, social interaction as well as hobbies were asked. Many of them seemed more aware of their physical changes that were tak-ing place than the psychological one. While this is true for all adolescents, it may prove more important for those with ASD as those changes may strongly impact their social relationships. Besides dealing with puberty-related changes, adoles-cents also face a new social reality. Although all participants reported difficulties on a social level, it is important to note their strong desire to cultivate and maintain friendships. Creating a bond may prove to be a challenge as the concepts of friendship and intimidation may not be well understood.
Expectations of Youth With a Fetal Alcohol Spectrum Disorder in Adulthood: Caregiver Perspectives
Jason Brown, Aamena Kapasi, Elizabeth Nowicki and Kyle Cleversey
There are limited data about adults who have fetal alcohol spectrum disorders (FASD). Caregivers of youth with FASD (N = 16) participated in telephone inter-views that included the open-ended question, “What kind of adult life do you think they will have?” A total of 57 unique responses were made to the question. These responses were grouped together independently by participants. Grouping data were analyzed using multidimensional scaling and cluster analysis. It is noteworthy that as well as highlighting concerns, participants also highlighted youths’ assets and hope for them as adults. Caregivers’ concerns about the future needs of their youth mirrors the literature on needs and expectations of adults with FASD. This consistency reinforces the lack of research attention to adults’ needs from care-giver perspectives. Participants also revealed deep concerns about their youth’s futures. Despite being committed to caregiving, caregivers indicated that they will not be able to do it well enough or long enough to keep their adult children from having serious problems.
Applying the HC-IDD Frailty Index to Developmental Sevices Agency Chart Data
Clarabelle Lee, Hélène Ouellette-Kuntz and Lynn Martin
Frailty is a common geriatric syndrome experienced by adults with intellectual and developmental disabilities (IDD) earlier than those without IDD. Measurement of frailty in this population is crucial to inform care planning aimed at preventing adverse outcomes. This study sought to determine whether frailty could be measured based on information documented in developmental services agency charts and how chart-derived scores performed compared to a validated frailty measure developed for adults with IDD who receive home care. Records from a developmental services agency were reviewed for the presence of deficits indicated in the Home Care – Intellectual and Developmental Disabilities Frailty Index (HC‑IDD FI). Only 13 of the 42 HC‑IDD FI deficits met the inclusion criteria to create a chart-derived score. In the developmental services sample (n = 170), the chart-derived score was associated with age, level of IDD, living arrangement, and hospitalization in the subsequent year, but not with sex. Poor agreement between the HC‑IDD FI and scores derived from items captured in charts was observed in a sample of 106 home care recipients with IDD. Assessing frailty among aging adults with IDD using developmental services agency records requires the systematic recording of changes in function to account for the dynamic nature of frailty.
Autism Spectrum Disorder Knowledge, Training and Experience: Ontario Physicians' Perspectives About What Helps and What Does Not
Golnaz Ghaderi and Shelley L. Watson
Background: Many physicians experience barriers such as lack of time and expertise, as well as facilitators such as collaboration with other healthcare professionals, when providing care for individuals with autism spectrum disorder (ASD). This study aimed to identify barriers and facilitators that Ontario physicians encounter when providing care for individuals with ASD.
Method: Twenty-seven physicians practicing in Ontario participated in a two-phase study. During the first phase, participants completed a questionnaire regarding their demographic information as well as their knowledge, competency and experiences when providing care for individuals with ASD. During the second phase, five participants answered questions about their experiences when providing care for individuals with ASD.
Results: In this study, physicians expressed their needs for further education and training regarding ASD. Despite physicians’ reported lack of comfort and expertise in diagnosing individuals with ASD, they identified working in an interdisciplinary team as a facilitator in helping them to provide care for this population. The findings also revealed that previous work experiences with individuals with ASD and collaborating with parents of children with ASD enhance physicians’ experiences when providing care for this population.
Conclusions: Findings have implications for raising awareness in healthcare and educational systems regarding the steps need to be taken to enhance Ontario physicians’ experiences when providing care for individuals with ASD.
Traditional and Cyber Bullying and Victimization Among Youth With Autism Spectrum Disorder: An Investigation of the Frequency, Characteristics and Psychosocial Correlates
Brett Holfeld, Brenda Stoesz and Janine Montgomery
High rates of Internet use among youth with autism spectrum disorder (ASD) in-creases the likelihood for engagement in cyber bullying and experiences of cyber victimization, which subsequently increases risk for behavioural and mental health problems. The current study aimed to examine the frequencies, characteristics, and psychosocial correlates of traditional and cyber bullying and victimization among youth with ASD. Youth with ASD (n = 23, aged 10–17 years) completed an online questionnaire about their experiences of traditional and cyber bullying and victimization, technology use, social support, symptoms of anxiety and depression, and life satisfaction. Parents answered questions related to their children’s general demographic characteristics (e.g., age, gender, cultural background) and autistic traits. Rates of traditional (60.9%) and cyber (73.9%) victimization exceeded rates for traditional (26.1%) and cyber (17.4%) bullying. Multiple regression analyses indicated that engagement in cyber bullying and experiences of cyber victimization were associated with increased symptoms of anxiety but not depression. Findings show the pervasiveness of bullying and victimization even amongst a small sample of youth with ASD, and demonstrate the importance of developing intervention strategies to help youth use effective coping strategies and to reduce the rates of traditional and cyber bullying and victimization in this population.