Health and Wellbeing in Developmental Disabilities

Additional authors: Kimberly Hunter (Senior Director, Clinical Programs, Safehaven); Nichola Higgs (Associate Director, Clinical Programs, Safehaven); Angel Payawal (Manager, Clinical Programs, Safehaven); Jyoti Hastir (Client Care Coordinator, Safehaven)

Safehaven’s Client and Family Experience Rounding initiative advances equity and participation in community-based care for medically complex populations. Through interviews and focus groups, clients and families were engaged in co-designing process and questions which shaped a standardized digital rounding questionnaire, ensuring their voices drive safety and quality improvements. Early findings highlight the value of transparent communication, consistent care teams, emotional support, and confidential feedback. Despite recruitment challenges, adaptive outreach fostered meaningful engagement and participation. This scalable model demonstrates how centering lived experience and inclusive engagement can strengthen safety culture and continuous improvement for developmental disability communities across Canada

There are potential service gaps to accessing autism supports and services in Saskatchewan and it is important to understand the current needs of Saskatchewan pediatric autistic individuals and their families. Caregivers shared how challenges accessing autism-specific funding and public services significantly impacted their financial, emotional, mental, social and physical wellbeing. Further, caregivers expressed potential solutions to these systematic challenges centred around minimizing barriers to access and use, extending funding, and enhancing access to supports for both child and caregiver. Interestingly, experiences of caregivers were similar regardless of funding status, which will be shared in greater detail in the presentation.

Additional authors: Ann Mills (PhD Student, York University); Jonathan A. Weiss (Professor, York University)

Autistic and non-autistic youth with intellectual disability (ID) both experience high rates of mental health problems. This project aimed to understand the differences in positive and negative mental health between autistic and non-autistic youth with ID, and potential mediators for group differences. Results suggest that co-occurring autism puts youth with ID at risk for less positive, and increased negative, mental health outcomes. These differences may be partially explained by their degree of involvement within their communities.

Additional authors: Saim Imran (Temerty Faculty of Medicine, University of Toronto); Erin Norris (Unity Health Toronto)

Adults with intellectual and developmental disabilities (IDDs) often face barriers to communicating their healthcare needs. CREATE (Cultivating Reflection, Empathy, and Awareness in Telling Experiences) is a narrative medicine workshop series that supports adults with IDDs in expressing their healthcare experiences through art and group reflection. It is led by medical and occupational therapy students and co-developed with Reena. The program was evaluated using a mixed-methods approach. Quantitative results showed significant improvements across eight survey items (p < .001) with large effect sizes. Thematic analysis revealed increased emotional awareness, confidence, and communication. CREATE fosters inclusive, person-centered care through interprofessional, community-based collaboration.

Additional authors: Indigo Harpole (Thomas Jefferson University); Ruby Srivastava (Thomas Jefferson University); Mary Stephens (Thomas Jefferson University)

Graduate medical education (GME) in the United States and Canada do not require curriculum to include intellectual and developmental disability (IDD) education. Medical educators need ways for learners to gain experience and familiarity with this population to provide quality care. This project focuses on the development of an online learning module series based on existing didactic materials which can be embedded into healthcare training curricula. The project was co-designed with a Community Advisory Board of patients and caregivers with lived experience of disability. We will share ways to integrate and scale this project into existing curricula.

Additional authors: Laura St. John (Supervisor, University of Calgary)

For youth with intellectual and developmental disabilities (IDD)—a lifelong condition characterized by impairments in social, cognitive, and adaptive functioning—physical inactivity is the norm. Individuals with IDD experience health disparities and are more likely to have multiple co-morbidities such as obesity, mental disorders, and epilepsy. Regular physical activity (PA) is essential for youth’s psychological, physical, and emotional health. One strategy for promoting PA participation is through a focus on physical literacy (PL). An 8-week ice-skating program grounded in PL and tailored to youth with IDD, offers a promising avenue to support their overall health and quality of life.

Additional authors: Jade Stobbart (Project Lead, Simon Fraser University); Amanda Hodges (Research Assistant, Simon Fraser University); Nathan Johnson (Research Assistant, Simon Fraser University)

Individuals with developmental disabilities (DD) report reduced social participation, which is associated with greater loneliness. Meanwhile, social media use (SMU) may enhance social connections among people with DD, suggesting it could moderate the relationship between social participation and loneliness; as was explored in the present study. The findings of our exploratory post-hoc analyses suggest that social media use may uniquely reduce loneliness among individuals with DD, but not among individuals without DD.

Additional authors: Munazza Tahir (Associate Director, Open Collaboration for Cognitive Disabilities); Nicole Williams (Project Administrator and Data Analyst, Department of Health Sciences, Wilfrid Laurier University); Lynn Martin (Professor and Chair of the Department of Health Sciences, Lakehead University); Virginie Cobigo (Founder and Executive Director, Open Collaboration for Cognitive Disabilities)

This study evaluated the cognitive accessibility of Health Canada’s palliative care resources. Eight experts with developmental disabilities reviewed three documents. Interviews identified key barriers: complex terms and lengthy paragraphs hindered understanding, while concise sentences and clear layouts helped. Advisors provided concrete recommendations to simplify language and redesign structure. Findings confirm that integrating lived experience is essential for creating equitable, inclusive health information, ensuring palliative care resources are accessible to all Canadians.

Additional authors: Attia Khan (Postdoctoral Fellow, Faculty of Health, York University); Ji Yon (Amy) Choi (Research Assistant, Faculty of Health, York University); Nasteho Hassan (Research Assistant, Faculty of Health, York University); Luz Maria Vazquez (Program Coordinator, Faculty of Health, York University); Nazilla Khanlou (Professor, Faculty of Health, York University)

Our scoping review highlights that racialized caregivers of youth with developmental disabilities (DDs) experience complex challenges that compromise their health and well-being and impact their ability to access essential services. The most critical challenges they face include, the financial burden of caregiving, emotional stress, cultural stigma, and a lack of trust in formal systems. These findings underscore the need to develop culturally sensitive strategies that enhance caregiver engagement and promote positive health outcomes. By addressing their unique challenges, healthcare systems can empower caregivers, leading to improved treatment engagement for their youth with DDs and overall better health and well-being.

This poster explores how leadership and institutional culture shape inclusion and wellbeing for neurodivergent learners. Drawing from doctoral research and professional practice in inclusive education, participants will examine how ableism manifests within systems and identify ways to build neurodiversity-affirming, relationship-centered environments.

Navigating Canada’s disability benefits system can be overwhelming. The GAIN Program (Guidance and Assistance in Navigating Disability Supports), offered by Vision Loss Rehabilitation Canada and funded by ESDC, provides free, personalized support to help individuals understand, apply for, and appeal disability benefits. GAIN Disability Benefit Navigators assist with applications for the DTC, CDB, and related supports. Through a community partnership model, GAIN ensures warm hand-offs and wrap-around service. This presentation shares early insights into increased benefit uptake and client satisfaction, and explores how the model can be adapted to promote equity and financial security for people with disabilities.

Additional authors: Nicole Bobbette (Assistant Professor, Queen’s University); Mary Chiu (Research Scientist, Ontario Shores Centre for Mental Health Sciences); Prachi Patel (Research Analyst, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health); Anupam Thakur (Scientist, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health); Tiziana Volpe (Research Coordinator, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health); Yona Lunsky (Director, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health)

This cross-sectional survey study examined the experiences and concerns of a cohort of aging sibling caregivers of adults with intellectual/developmental disabilities (IDD). Caregivers expressed concern about their brain health and worried about cognitive decline in themselves and their siblings with IDD. They reported high levels of stress and emotional strain, though they also endorsed positive experiences like an increased sense of meaning and a closer bond with their sibling with IDD. Understanding the unique challenges faced by aging sibling caregivers will help service providers address their concerns and support their well-being.

The Compassionate Corner program evolved from a recognized need to assist the IDD community with cumulative loss. This community carries deep grief from a multiplicity of loss and trauma and access to services are often limited as few targeted support resources exist in rural areas and paid counselling is often beyond the ability of residents to access. The goal of the Program is to help participants explore, cope and adapt to loss while providing a safe and confidential space to share worries and concerns. We approach grief and loss creatively focusing on reducing traumatic reactions and enhancing skill building and resilience.

My Person Centered Planning, led by Jordan Smelley, MHPS and Certified People Planning Together Trainer, empowers participants to shift planning from system-driven to person-driven. It explains the discovery process for identifying what is important to and for someone, balancing strengths, preferences, and needs to create actionable vision/outcome statements and goals.

Additional authors: Yousef Safar (Medical Student, Queen’s School of Medicine); Yona Lunsky (Scientific Director, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health); Nicole Bobbette (Assistant Professor, Queen’s University); Prachi Patel (Research Coordinator, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health); Tiziana Volpe (Research Coordinator, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health); Avra Selick (Scientist, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health)

Little is known about how adults with intellectual and/or developmental disabilities (IDD) living in remote areas, such as Northwestern Ontario, access healthcare services and resources. This qualitative study explores how adults with IDD, their family caregivers, and support staff navigate healthcare in this region. Interviews and focus groups were conducted across these groups. Preliminary findings highlight significant geographical and structural barriers, community strengths and strategies for accessing care, and the vital roles of caregivers and staff. These insights will help identify and inform the healthcare needs of adults with IDD living in remote communities.

Additional authors: Rebeca Heringer (University of Manitoba); Anne Kresta (University of Manitoba)

Qualitative insights from this Manitoba-based study examining issues faced by persons with intellectual and developmental disabilities, revealed that direct workforce pressures impacted service quality and continuity. Stakeholders identified challenges with retention as evidenced by high turnover and shortages of trained staff, likely driven by compensation and limited advancement opportunities. Priority recommendations included accreditation and standardization of training, centralizing waitlists through a portal, and addressing transportation and geographic barriers, particularly in indigenous and rural settings. While the study is centred on Manitoba, the challenges appear in multiple provincial contexts, and thus suggestions may also be scalable, and applicable across the board.

Additional authors: Carlos Denner Dos Santos (Professor, PhD, Management Department, University of Brasília); Annette Majnemer (Professor, School of Physical and Occupational Therapy, McGill University); Keiko Shikako (Associate Professor, School of Physical and Occupational Therapy, McGill University); Jooay App Research Group (CHILD-BRIGHT Network)

Children and youth with disabilities (CYD) face persistent barriers to participating in leisure activities, which are essential for development and well-being. This project co-designed and evaluated Jooay, a gamified mobile health app integrating an AI-based recommendation system to promote inclusive participation. Through co-design with CYD, parents, and clinicians, the app incorporates personalized goal setting, progress tracking, and tailored activity recommendations. Usability and pilot studies demonstrated high satisfaction and engagement, showing that Jooay reduces barriers, fosters inclusion, and supports healthy behaviors, offering a scalable public health tool to enhance participation and quality of life.

Additional authors: Flora Roudbarani (PhD Candidate, Clinical Developmental Psychology, York University); Jonathan Weiss (Professor, York University)

Clinical psychology trainees receive limited training and report lower intentions to work with youth with developmental disabilities. This study examined how didactic, applied, and training hours relate to intentions to work with autistic youth, youth with intellectual disability (ID), or autistic youth with ID, and whether attitudes, confidence, and normative pressure mediate these links. All training types influenced intention for autistic youth with ID (no mediators). Confidence mediated the association between training and intention for autistic youth, and attitudes mediated the relationship between training hours and intention for youth with ID. Findings highlight the need for greater DD training.

Parents with disabilities face many barriers to accessing efficacious supports and services designed to support thriving in their parenting role. This plain language research poster presents findings from a scoping review of 28 studies centering parents lived experiences. Ableism was a theme in all the studies. Parents with disabilities faced discrimination and judgement in society, child welfare systems, support networks, and how parents with intellectual disabilities see themselves. Implications for policy and practice are presented.

Additional authors: Jennifer Baumbusch (University of British Columbia)

Although children with medical complexity (MC) represent less than 1% of Canada’s pediatric population, they have the highest healthcare usage and account for a third of pediatric expenditures. While the majority of research has focused on white families, little is known about the experiences of racialized newcomer families. This qualitative study involved interviews with eight parents in British Columbia to examine barriers to care. Three key themes were identified: lack of cultural and contextual understanding beyond direct translation, experiences of racism, and limited efforts to understand families’ goals and preferences. Findings highlight recommendations for equity-driven care to support this population.