Health and Wellbeing in Developmental Disabilities

A Clinical Fellowship in the Psychiatry of Developmental Disabilities: The Importance of Increased Training in an Underserved Area

Studies suggest that the prevalence of developmental disability (DD) in Canada is anywhere from one to three percent of the general population. Psychiatric disorders also exist at a higher rate in people with DD. The Developmental Disabilities Program in the Department of Psychiatry at the Schulich School of Medicine & Dentistry at Western University created and implemented a one-year Clinical Fellowship in the Psychiatry of DD to help address the shortage of experts in the field of DD.

Presented by: Sarah O’Flanagan (Program Coordinator, Western University); Georges Loba-Gutierrez (Assistant Professor, Western University)

Additional authors: Rob Nicolson (Chair, Developmental Disabilities Program, Western University)

A Review of the Barriers and Facilitators to Providing an Annual Health Check for People with Intellectual and Developmental Disabilities in Primary Care

Individuals with intellectual and developmental disabilities (IDD) experience challenges that can impair access to health care. Primary care providers can provide continuity of care and conduct preventative health screenings for this population, particularly by completing an annual health check (AHC). Thus, this narrative review aimed to identify barriers and facilitators to implementing an AHC, in primary care, for patients with IDD. Various physician, patient, facility, and system factors were identified. Ultimately, developing patient centered resources, increasing awareness for healthcare providers on the importance of AHCs, and implementing protocols to support patient navigation would help optimize healthcare for this population.

Presented by: Shelby Olesovsky (Family Medicine Enhanced Skills Resident in Intellectual and Developmental Disabilities, University of Toronto)

Additional authors: Sabine Calleja (Information Specialist, Unity Health Toronto, St. Michael’s Hospital Library); Laurie Green (Family Physician, St. Michael’s Hospital, Unity Health Toronto)

A Scoping Review of the Literature on Social Support Needs of Racialized Families of Youth with Developmental Disabilities

Youth with developmental disabilities (DDs) experience attitudinal, social, economic, cultural, and physical challenges. They face barriers along life-domains including work, education, health, and community participation. A scoping review of the literature to examine: a) barriers and facilitators of social support for racialized families of youth with DDs (ages 16-29 years); and b) emerging best practices for provision of equity-informed social support for racialized populations with DDs. Four social support related themes were found: employment, service system, health, and education. There is a need for access to resources to promote empowerment among families of youth with DDs.

Presented by: Attia Khan (Post-Doctoral Fellow, Contract Faculty, York University)

Additional authors: Nazilla Khanlou (Associate Professor School of Nursing, Women’s Health Research Chair in Mental Health, York University); Luz M. Vazquez (Contract Faculty, Research Associate/Coordinator, York University); Kira Vimalakanthan (Director of Research and Mental Health Services, SAAAC Autism Centre); Joyce Kamanzi (Post-Doctoral Fellow, York University); Danielle Washington (Research Assistant, York University); Negar Pour Ebrahim Alamdar (Contract Faculty, York University)

Accessible and Specialized COVID-19 Testing for Children and Youth with Medical Complexity

Exploring the use of a specialized COVID-19 PCR testing center with accommodations for children with medical complexity and neurodevelopmental and physical disabilities, to ensure accessible and equitable access to testing for this unique population.

Presented by: Blossom Dharmaraj (Clinical Research Manager, The Hospital for Sick Children)

Additional authors: Cindy Bruce-Barrett (Director International Affairs, The Hospital for Sick Children); Aaron Campigotto (Staff Physician, The Hospital for Sick Children); Michelle Science (Staff Physician, The Hospital for Sick Children); Julia Orkin (Medical and Fellowship Director, Complex Care Program and Pediatrician, The Hospital for Sick Children)

Examining and Comparing Diagnostic Prevalence of Dementia and Mental Illness in Persons with and without Intellectual and Developmental Disabilities: A Population-Based Study

Background: There is limited information on mental health disparities, experienced by adults with intellectual and developmental disabilities (IDD) in Manitoba. Objectives: Examine and compare the diagnostic prevalence of mental illnesses and dementia among Manitoba adults with and without IDD matched by age, sex, and region of residence; Methods: Linked administrative data will be used to compute period prevalence. Risk Ratios and their 95% confidence intervals will be used to compare the risk between the two study groups. Significance: Findings can be used for developing more effective mental health services, and policies, and to promote health of persons with IDD.

Presented by: Kayla Kostal (MSc student, University of Manitoba)

Additional authors: Shahin Shooshtari (Professor, University of Manitoba)

Exploring Implementation Strategies for COVID-19 Infection Control Guidance in Congregate Living Settings within the Developmental Services Sector in Ontario

COVID-19 has put the lives of people with intellectual and developmental disabilities (IDD) at risk. This study explored the experiences of agencies implementing infection control guidance in congregate settings. Findings revealed action-oriented successes, challenges, and strategies used during the implementation of infection control guidelines in practice. Thematic analysis resulted in five main themes – Communication, Collaboration, Finding and Managing Resources, Agency Capacity, and Future Considerations. To ensure feasible implementation for congregate living settings and the population supported, guidance must recognize the needs of those with IDD in the unique characteristics of their living settings.

Presented by: Michelle Rianto (she/her, Master of Health Administration Degree Candidate, Johns Hopkins Bloomberg School of Public Health)

Additional authors: Matt Freeman (Researcher, McMaster University); Briano Di Rezze (Co-Director, CanChild Centre for Childhood Disability Research)

Falling Through the Cracks: Uncovering the Challenges of Accessing Healthcare Services for Older Adults with Developmental Disabilities

The goal of this project is to understand the challenges of accessing healthcare services among older adults with developmental disabilities to inform future research, develop recommendations, and co-design approaches to improve access to healthcare services. Applying the Toronto Translational Framework to investigate this issue, we placed the patient at the center of the problem while reviewing published literature, networking, and conducting informal conversations with stakeholders to discover unmet needs, identify knowledge gaps, and contextualize the problems. Our team identified and verified six main themes to summarize the problems associated with aging adults living with developmental disabilities accessing services in Ontario.

Presented by: Samuel Neumark (Graduate Student, Translational Research Program, University of Toronto); Ellis Gao (Graduate Student, Translational Research Program, University of Toronto) ; Jaspreet Randhawa (Graduate Student, Translational Research Program, University of Toronto); Melanie Yang (Graduate Student, Translational Research Program, University of Toronto)

Additional authors: Jamie Block (Graduate Student, Translational Research Program, University of Toronto); Alexander Moore (Graduate Student, Translational Research Program, University of Toronto); Sandy Stemp (Chief Operations Officer, Reena); Richard Foty (Assistant Professor, Translational Research Program, University of Toronto)

IDD Competencies of Undergraduate Medical Students in Canada: A Needs Assessment Study

Many people with IDD have complex health needs that are poorly addressed, experiencing higher rates of negative health outcomes, hospitalization and premature mortality. Physicians in every area of medicine are likely to care for people with IDD. In order to ensure that all physicians are able to provide unbiased and high-quality care to their patients with IDD, we need to consider interventions at the level of undergraduate medical education. This study focused on understanding the training needs of undergraduate medical students by examining their levels of exposure, attitudes, and knowledge surrounding the healthcare of people with IDD.

Presented by: Alyssa Yip (she/her, MD Candidate, University of Toronto); Soumya Mishra (Research Analyst, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health)

Additional authors: Irfan Jiwa (Family Medicine Resident, University of Toronto); Laura Koch (MD Candidate, University of Toronto); Olivia Mendoza (MD Candidate, Queen’s University); Amandi Perera (MD Candidate, University of Western Ontario); Gabriel Tarzi (MD Candidate, University of Toronto); Susan Graham (Senior Scientist, Alberta Children’s Hospital Research Institute); Anupam Thakur (Clinician Scientist, Centre for Addiction and Mental Health); Yona Lunsky (Senior Scientist, Centre for Addiction and Mental Health)

Integrated Psychiatric Support for Caregivers of Children with Medical Complexity: Preliminary Study Findings

Caregiving for children with medical complexity (CMC) can be associated with increased prevalence of mental health disorders. Timely access to psychiatric care that acknowledges the caregiver role may improve caregiver mental health outcomes. Using a mixed methods descriptive study design, our team explored perceptions of integrating psychiatric care within a paediatric program for caregivers of CMC. Preliminary results indicate decreasing trends in caregiver psychometric scores over time. Caregivers described feasibility challenges such as difficulty scheduling appointments. Emerging themes from interviews suggest the integrated psychiatrist understood the unique context of caregiving for CMC and provided beneficial treatments, diagnoses, and coping strategies.

Presented by: Natasha Bruno (she/her, Clinical Research Project Manager, The Hospital for Sick Children); Julie Rose (Family Partner, The Hospital for Sick Children)

Additional authors: Kayla Esser (Clinical Research Project Manager, The Hospital for Sick Children); Nora Fayed (Associate Professor, Queen’s University); Natasha Saunders (Pediatrician and Health Services Researcher, The Hospital for Sick Children); Peter Szatmari (Chief, Child and Youth Mental Health Collaborative, Centre for Addictions and Mental Health); Elisabeth Wright (Psychiatrist, Women’s College Hospital); Simone Vigod (Head, Department of Psychiatry, Women’s College Hospital); Eyal Cohen (Program Head of Child Health Evaluative Sciences, Senior Scientist and Pediatrician, The Hospital for Sick Children); Julia Orkin (Medical and Fellowship Director, Complex Care Program and Pediatrician, The Hospital for Sick Children)

Nutrition Status and Services of Children Born with Down Syndrome: A Canadian Perspective

Down syndrome is a natural variation of a chromosomal arrangement, associated with chromosome 21. 1 in 750 live born babies in Canada has Down syndrome. Increased rates of nutrition-related conditions and diseases are associated with Down syndrome such as overweight and obesity, and Alzheimer’s disease. In Canada, there is no current data on the dietary intake and nutritional status of Canadians born with Down syndrome. My proposed study will determine the current dietary intake and nutritional status of Canadian school-aged children born with Down syndrome. I will also explore their lived experience and preferences for receiving nutrition information and services.

Presented by: Maria Baranowski (PhD student, University of Manitoba)

Additional authors: Shahin Shooshtari (Professor, University of Manitoba)

Perceptions of Inclusion in Informal Education Settings

The primary aim of this study is to evaluate the perceptions of inclusion of children with developmental and/or intellectual disabilities in informal education settings. Findings from this study are intended to increase accessibility and inclusion for these individuals and their families who may otherwise be unable to access informal education opportunities as well as aid in developing future programming and accessibility policies. This poster will provide details regarding the mixed methods approach taken, including interviews with stakeholders and concept mapping procedures. Furthermore, an examination of the study’s relevance and a discussion of the results will be included.

Presented by: Israa Ibrahim (she/her, Undergraduate Student, University of Western Ontario)

Additional authors: Nicole Neil (she/her, Associate Professor, Associate Dean (Research), Coordinator, MPEd in the field of Applied Behaviour, University of Western Ontario); Abigail Withers (she/her, Master’s Student, University of Western Ontario)

Psychological Flexibility in Acceptance and Commitment Training (ACT) for Family Caregivers of Individuals with Neurodevelopmental Disabilities

Ninety-six family caregivers (hereinafter referred to as caregivers) of people with neurodevelopmental disabilities participated in a group-based Acceptance and Commitment Training (ACT) intervention aimed at increasing psychological flexibility. We examined change in psychological flexibility pre-post intervention, as well as demographic and clinical predictors of flexibility. Results revealed that psychological flexibility significantly increased pre to post-intervention irrespective of caregiver and child demographic and clinical variables. Findings also demonstrated that being a caregiver of a younger child predicted greater psychological flexibility pre-intervention.

Presented by: Soumya Mishra (Research Analyst, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health); Johanna Lake (Clinician Scientist, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health)

Additional authors: Yona Lunsky (Senior Scientist, Centre for Addiction and Mental Health); Alex Porthukaran (Psychologist, Adult Neurodevelopmental Services, Centre for Addiction and Mental Health); Kenneth Fung (Clinician Scientist, University Health Network; University of Toronto); Lee Steel (Family Leader, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health); Carly Magnacca (Research Analyst, Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health); Brianne Redquest (Post-Doctoral Fellow, University of Calgary)

Successful Housing Elements and Developmental Disabilities (SHEDD): Promoting Meaningful Rituals of Dwelling and Community Participation Through Housing Design

Successful Housing Elements and Developmental Disabilities (SHEDD) is a tool that identifies key elements of housing design and construction that can help to support people labeled with intellectual and developmental disabilities and exceptional behaviours that challenge to live healthy and well in their homes and communities. The SHEDD tool was developed by a multidisciplinary research team. Through a webinar series, the research was shared and the tool updated based on feedback from self-advocates, families, service providers, and housing design professionals. This poster will describe design principles and housing examples that are part of an updated version of the SHEDD tool.

Presented by: Armineh Babikian (she/her, PhD Student, University of Toronto); Yani Hamdani (she/her, Assistant Professor, University of Toronto)

Additional authors: Jane Casson (Project Coordinator, University of Toronto); Bhavnita Mistry (she/her, Research Coordinator, University of Toronto)

The Sector Pandemic Planning Initiative: How Agencies in the Developmental Services Sector in Toronto Worked Together to Address Challenges Arising from the COVID-19 Pandemic

To meet the challenges arising from the COVID-19 pandemic, 28 agencies in the Toronto Developmental Services Alliance created the Sector Pandemic Planning Initiative (SPPI). This project evaluated the effectiveness of the SPPI on agency pandemic preparedness, and staff well-being during the pandemic. A mixed methods approach was used including online surveys completed by 53 frontline and 35 management staff and 24 qualitative interviews with 10 direct support and 14 management staff. Results showed that the SPPI produced useful resources and supports that contributed to improved pandemic preparedness. Recommendations to enhance future pandemic preparedness are made.

Presented by: Barry Isaacs (he/him, Director, Research, Evaluation and Education, Surrey Place)

Additional authors: Anna Durbin (Scientist, Unity Health); Linn Holness (Scientist, Unity Health); Uzma Ahmed (Research Coordinator, Unity Health); Chelsea Conrad-Ferguson (Program Counselor, Pegasus Toronto); Kahiye Warsame (Research Coordinator, Unity Health); Peri Ren (Medical Student, University of Toronto); Yona Lunsky (Senior Scientist, Centre for Addiction and Mental Health); Michell Firestone (Scientist, Unity Health); Ahmed Bayoumi (Scientist, Unity Health)

“They Need to Speak a Language Everyone Can Understand”: Findings from a Survey on the Accessibility of Canada’s COVID-19 Vaccine Information for Adults with Intellectual and Developmental Disabilities

Adults with intellectual and developmental disabilities (IDD) have been overlooked as a priority group in Canada’s COVID-19 vaccine rollout, despite evidence demonstrating increased risks for mortality and hospitalization. The availability of accurate and accessible information about vaccines has been scarce and little is known about the experiences of adults with IDD and their caregivers. People with IDD and their caregivers from across Canada completed a survey about their experiences with finding, understanding, and using vaccine-related information during the pandemic. Results highlight the facilitators and challenges encountered and recommendations on how to make the vaccination process accessible to this vulnerable population.

Presented by: Sabrina Campanella (Research Coordinator, Centre for Addiction and Mental Health); Yousef Safar (Patient Engagement Coordinator in Research, Centre for Addiction and Mental Health)

Additional authors: Tiziana Volpe (Research Coordinator, Centre for Addiction and Mental Health); Yona Lunsky (Senior Scientist, Centre for Addiction and Mental Health)

Transition Education for Young Adults with Disabilities: What’s Provided, and What’s Needed – A Multi-Stakeholder Perspective

This poster presents the findings of a province-wide research study that examined the provision of transition education in the province of Manitoba for persons with disabilities from multiple stakeholders’ perspectives including persons with disabilities, caregivers, educators and service providers. The researchers present the firsthand experiences of persons with disabilities and their caregivers with receiving supports, and their overall satisfaction with the quality of services offered across the 11 essential areas of Transition Education articulated by Patton and Clark.

Presented by: Nadine Bartlett (Assistant Professor, University of Manitoba)

Additional authors: Eefa Khan (Graduate Student, University of Manitoba); Anne Kresta (Executive Director, Level it Up MB); Rebecca Heringer (Post doc, University of Manitoba)