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- ItemSystem kids: transition-aged youth from foster care to developmental services(2019) Hutton, Sue; Head, Kevin John; Lyttle, Sarah; Jordyn; Kenneally, Noah; Rehou, MajaThis paper shines a light on the stories of three young adults labeled with an intellectual disability1; all three have transitioned out of foster care and are now receiving developmental services in different settings in Ontario. All three have experienced varying degrees of human rights violations throughout their time in foster care as well as in developmental services. By human rights violations, we mean violations that are not necessarily always under the law, but violations to make their own decisions throughout any given day. This point shall be illuminated through the stories of the three youth who share details of these violations in concrete terms. The three have come from a diversity of backgrounds, representing what it is like to grow up in the system with Fetal Alcohol Spectrum Disorder (FASD), with Autism Spectrum Disorder (ASD), and with mobility disabilities. All three want people to know the truth about what it is like surviving the system with an intellectual disability, not only in foster care, but now, continuing to live “trapped” (as one of the young adults calls it) in the confines of the often rights- restricting world of developmental services. We balance the stories with background on the setting of developmental services and service delivery for transitional aged youth (in this paper we shall say “youth” as our co-authors have chosen) with a literature review and with interviews from developmental services staff in Ontario agency settings. This paper includes the stories of the three young adults providing their truths – painful and honest, in both written form and in graphic form. The graphic data collected provides an accessible visual depiction of the isolation and pain endured in the system.
- ItemCripping the controversies: Ontario rights-based debates in sexuality education(2020) Davies, Adam W. J.; Kenneally, NoahComprehensive sexuality education is increasingly being employed on a global scale, with controversies arising regarding the content of such education and the rights of children to access sexuality education versus parents’ rights to decide the moral education of their children. In this paper, we utilise crip theory and a critical disability studies lens to analyse controversies surrounding parents’ rights versus children’s rights in the context of comprehensive sexuality education in Ontario, Canada. Using a disability studies perspective, this paper discusses the erasure of disabled children and youth in debates over children’s and parents’ rights while problematising the liberal humanist and legal frameworks often employed in comprehensive sexuality education and children’s rights. As such, we theorise how a more relationally attuned version of both children’s rights and comprehensive sexuality education can avoid oppositional politics and the reification of liberal humanist and ableist ideologies.
- ItemDRAVET ENGAGE. Parent caregivers of children with Dravet Syndrome: Perspectives, needs, and opportunities for clinical research(2021) Juandó-Prats, Clara; James, Emma; Bilder, Deborah A.; McNair, Lindsay; Kenneally, Noah; Helfer, Jennifer; Huang, Norman; Vila, Maria Candida; Sullivan, Joseph; Wirrell, Elaine; Rico, SalvadorDravet syndrome (DS) is an intractable developmental and epileptic encephalopathy significantly impacting affected children and their families. A novel, one-time, adeno-associated virus (AAV)-mediated gene regulation therapy was designed to treat the underlying cause of DS, potentially improving the full spectrum of DS manifestations. To ensure the first-in-human clinical trial addresses meaningful outcomes for patients and families, we examined their perspectives, priorities, goals, and desired outcomes in the design phase through a mixed methods approach (quantitative and qualitative). We conducted a non-identifiable parent caregiver survey, shared through a patient advocacy organization (n = 36 parents; children age 6 years). Parents were also engaged via three group discussions (n = 10; children age 2– 20 years) and optional follow-up in-depth individual interviews (n = 6). Qualitative data analysis followed an inductive interpretive process, and qualitative researchers conducted a thematic analysis with a narrative approach. Survey results revealed most children (94%) were diagnosed by age 1, with onset of seizures at mean age 6.2 months and other DS manifestations before 2 years. The most desired disease aspects to address with potential new disease-modifying therapies were severe seizures (ranked by 92% of caregivers) and communication issues (development, expressive, receptive; 72–83%). Qualitative results showed the need for trial outcomes that recognize the impact of DS on the whole family. Parents eventually hope for trials including children of all ages and were both excited about the potential positive impact of a one-time disease-modifying therapy and mindful of potential long-term implications. Participants reflected on the details and risks of a clinical trial design (e.g., sham procedures) and described the different factors that relate to their decision to participate in a trial. Their main aspirations were to stop neurodevelopmental stagnation, to reduce seizures, and to reduce the impact on their families’ wellbeing. To our knowledge, this is the first study within a patient-oriented research framework that specifically explored parents’ needs and perceptions regarding clinical trials of a potential disease-modifying therapy for children with a severe, developmental disease, such as DS.
- ItemA snapshot of gay-straight alliance clubs and student well-being in Western Canadian high schools(2023) Di Stasio, Maria; Alston, Lauren; Harley, JasonGay-Straight Alliance (GSA) clubs promote safer school environments for students. GSAs typically refer to student-led, teacher-supported school clubs that serve youth of diverse gender identities and sexual orientations. This study investigated the relationship between students’ awareness of school-based GSAs and their bullying experiences, mental health, self-determination, and relationships at school and home. Findings showed that LGBTQ2S+ students experienced higher rates of bullying and symptoms of depression and scored lower on self-determination subscales than cisgender heterosexual students. Interestingly, students who were aware of their school’s GSA club scored higher on the self-determination subscales regarding family relationships and lower on bullying compared to students who were unaware of their school’s GSA club. LGBTQ2S+ students had lower rates of comfort with their sexual orientation at home and school than their cisgender heterosexual students. Implications and future directions are discussed.
- ItemClassroom practices and peer social status in junior high school(2023) Di Stasio, Maria; Savage, RobertBullying by peers remains a serious problem facing adolescents. A key social support for adolescents is their parents. The unique contributions of specific dimensions comprising authoritative parenting, and adolescents’ involvement in bullying situations was investigated. Self-report data were collected from 125 grade 7 students and 100 grade 8 students (60% female; mean age = 12.74 years). Model testing indicated a positive relationship between parent support, beliefs against aggression, high levels of communication, and low levels of bullying and victimization, both in self-reports, and in effectiveness of problem-solving in hypothetical bullying situations. Results indicate that warm, supportive parenting influences the way adolescents consult with their parents about how to manage conflict, deal with bullying issues, and identify solutions to interpersonal problems. The implications of these findings may influence the comprehensiveness of prevention and intervention models that focus on the aspects of parental education.