Day 1: Wednesday February 7, 2024
Breakout A (12:45pm-1:45pm EST)
Lived Experiences of Parents with Intellectual and Developmental Disabilities: Stories and Promising Practices
Presented by: Michelle Goos (Strategic Initiatives Advisor, Community Living BC); Lizzy Walsh (Graduate Student, UBC Okanagan)
Additional authors: Rachelle Hole (Professor/Director of the UBC Canadian Institute for Inclusion and Citizenship, UBC Okanagan); Lori Skinner (Research and innovation lead, Community Living BC); Arielle Lomness (Interim Associate Chief Librarian, Research and Collections, UBC Okanagan)
Canada has a long and unsettling history of discrimination and prejudice toward parents with disabilities. To best support parents with intellectual and developmental disabilities (IDD), it is essential first to understand their lived experiences. However, little current research focuses on the first-hand narratives of parents with IDD within Canada. The purpose of this workshop is to share knowledge from a novel research project looking at the experience of parents with IDD in British Columbia. Guided by self-advocates, this project includes a literature review, individual interviews and focus groups with parents, and a survey of frontline workers and supporters of parents.
“They Should Respect Us”: Supporting Successful Transitions from Hospital to Home for Alternate Level of Care (ALC) Patients with a Dual Diagnosis
Presented by: Avra Selick (Project Scientist, CAMH); Sandy Stemp (Chief Operating Officer (COO), Reena); Melonie Hopkins (Transition Manager, CAMH); Judith Wiener (Family Member and Professor Emerita, University of Toronto); Sue Gosselin (Family Caregiver)
Additional authors: Tiziana Volpe (Research Coordinator, CAMH); Michelle Chin (Bilingual Knowledge Broker, CAMH); Lianne X (Family Advisor/Peer Facilitator, CAMH)
Adults with a dual diagnosis (developmental disabilities and psychiatric conditions) are more likely to be hospitalized and receive an alternate level of care (ALC) designation. This means they longer require hospital-level care but remain hospitalized due to a lack of suitable community settings. This workshop will review recently published practice guidance for hospitals and community providers on the principles and core components necessary for effective transitions. Our panel, including two family members, a hospital transition manager and a senior lead from a developmental services agency, will share their insights and experiences on how to support successful transitions in real-world practice.
Changing Behaviours around Periodic Health Checks: Is it time to Reinvent the Wheel?
Presented by: Karen McNeil (Family Physician, Dalhousie Faculty of Medicine); Kate Awen (Disability Support Worker, Visual Communication)
Additional authors: Jillian Achenbach (Family Physician, Dalhousie Family Medicine); Beverly Lawson (Researcher, Dalhousie Family Medicine); Alannah Delahunty-Pike (Researcher, Dalhousie Family Medicine); Dunn Katherine (Researcher, Dalhousie University); Brittany Barber (Researcher, Dalhousie University); Heidi Diepstra (Researcher, Surrey Place)
Although the Canadian Consensus Guidelines for Primary Care of Adults with Intellectual and Developmental Disabilities recommends conducting Periodic Health Checks, uptake is lacking. This qualitative study sought to understand factors influencing the conduct of Periodic Health Checks and identify what needs to change to increase them. Five stakeholder groups: adults with intellectual and developmental disabilities, disability support workers, primary care providers, and administrative staff were interviewed. The interview was guided by the Behaviour Change Wheel model. Barriers and facilitators to support Periodic Health Checks were tabulated. Despite barriers, stakeholders saw merit and healthcare equity in performing Periodic Health Checks.
Mindfulness for People with Developmental Disabilities
Presented by: Kirsten Smith (Post-Doctoral Fellow, Azrieli Adult Neurodevelopmental Centre, CAMH); Sue Hutton (Registered Social Worker, Azrieli Adult Neurodevelopmental Centre, CAMH); Jan Wozniak (Program Engagement Facilitator, Azrieli Adult Neurodevelopmental Centre, CAMH)
Additional authors: Yani Hamdani (Clinician Scientist, Azrieli Adult Neurodevelopmental Centre, CAMH)
This workshop will begin by presenting results from two studies on mindfulness: 1) a critical interpretive synthesis examining ablesim and its effects on mindfulness for people labelled with developmental disabilities; and 2) a qualitative study exploring experiences of mindfulness from the perspective of adults with developmental disabilities. Two presenters will then co-facilitate adapted mindfulness practices. Next, a presenter who is an Autistic adult with experiences of mindfulness will offer insights related to the research. Finally, this workshop will end with an opportunity for reflection and discussion. Implications for improving the accessibility of mindfulness for this population will be discussed.
A Cross – Sectoral Approach to Care for Medically Complex Individuals with Developmental Disabilities
Presented by: Whitney Faragher (Health Care Facilitator, Community Networks of Specialized Care- Central East/CLH DSS); Sandra Martino (Health Care Facilitator, Community Networks of Specialized Care- Central East/CLH DSS)
This workshop will highlight the importance of exploring and preparing medically complex individuals in a dynamic way on their journey to accessing health care supports. Positive coping skills for individuals with chronic complex health conditions will be identified by taking a holistic approach in navigating different system sectors to seek approaches in addressing barriers and accessing equitable health care. Innovative and collaborative approaches will be demonstrated in relation to support for those living with chronic health conditions. Tools and resources will also be highlighted as they are a necessary element to support individuals and families navigating cross – sectoral support.
Breakout B (2:15pm-3:15pm EST)
Forming The Circle: Indigeneity, Neurodevelopmental Disabilities, and Mental Health
Presented by: Kendra Thomson (Professor, Brock University); Louis Busch (Community Support Specialist, CAMH)
Drawing upon the knowledge shared at the 2023 Gathering on Indigeneity, Neurodevelopmental Disabilities, and Mental health, this presentation will explore Indigenous views on neurodevelopmental differences, emphasizing a unique perspective of neurodiverse individuals as bearers of special gifts and a strong connection to spirituality. Indigenous care for neurodevelopmental disability is rooted in holistic well-being, including spiritual, mental, physical, and emotional and relational elements. We will discuss the impact of colonization and current inequities in social and healthcare systems, as well as potential short- and long-term actions which may lead to positive change.
Changes in Health-Promoting Lifestyle-Related Factors Among Adults with Intellectual and Developmental Disabilities After Community Transition
Presented by: Maria Baranowski (Research Intern, University of Manitoba)
Additional authors: Kayla Kostal (Research Intern, University of Manitoba); Margherita Cameranesi (Research Associate, University of Manitoba); Lindsay McCombe (Manager, St. Amant Research Centre); Depeng Jiang (Professor, University of Manitoba); Shahin Shooshtari (Professor, University of Manitoba)
We conducted a mixed-methods longitudinal evaluation study to evaluate the impact of community transitions to health in 32 adults with severe intellectual and developmental disabilities living in Manitoba, Canada. We collected quantitative and qualitative data which was analyzed descriptively and by content analysis, respectively. Our findings indicate few concerns about diet quality, no tobacco use or alcohol consumption, sufficient exercise, sleep problems, and a variety of social/recreation activities among our study cohort after their transition to community living. We recommend future research studies to explore in more detail lifestyle-related behaviours identified for long-term good health among adults with IDD.
Potential Benefits of a Genetic Diagnosis for Adults with a Developmental Disability: Experience Gained from 500 Individuals with the Most Common Microdeletion
Presented by: Lisa Palmer (Social worker, University Health Network); Samantha D’Arcy (Dietitian, University Health Network)
Additional authors: Anne Bassett (MD, FRCPC, Psychiatrist, University Health Network); Maria Corral (MD, FRCPC, Psychiatrist, University Health Network)
A genetic diagnosis may have many important benefits for individuals with developmental / intellectual disabilities (DD/ID) – even, or perhaps especially for adults. Participants will hear about experience gained from 500 adults with a 22q11.2 microdeletion – the second most common cause of DD/ID to Down syndrome. Many gained a genetic diagnosis as adults, leading to improvements in health care, understanding and supports.
Using Arts-Based Knowledge Translation to Foster and Develop Belonging for Young Adults with Intellectual and Developmental Disabilities
Presented by: Runqun Helen Zheng (Graduate Student, University of Toronto); Francis Routledge (Graduate Student, University of Toronto); Zoe Stanley (Project Consultant, University of Toronto)
Additional authors: Maria Jennifer Estrella (Project Coordinator, University of Toronto); Mushfika Chowdhury (Graduate Student, University of Toronto); Rebecca Renwick (Professor, University of Toronto)
The Pathways to Belonging (P2B) inclusive research project developed a conceptual framework illuminating processes through which young adults with intellectual and developmental disabilities (IDD) develop a sense of belonging. The research team, comprised of researchers, community partners and three young adults with IDD, used inclusive, collaborative, arts-based knowledge translation (KT) approaches to facilitate practical applications of the findings. This workshop will explore how: (1) to promote, develop, and support belonging for young adults with IDD and (2) arts-based KT in the form of comics and infographics can be an essential tool for communicating findings in accessible ways to target audiences.
Does Canada need a National Disability Strategy and Funding Program? Lessons Learned from Australia’s 10-year Experience
Presented by: Alvin Loh (Developmental Paediatrician, Surrey Place); Hubert Van Niekerk (Vice Chair, Every Canadian Counts); Olaf Kraus De Camargo (Co-Director, CanChild Centre for Childhood Disability Research)
People with disabilities have increased costs associated with disability, and have difficulty accessing needed care in a timely manner. National support for these issues include the Canada Disability Benefit Act and a National Autism Strategy. However a National Disability Strategy with National funding would be more inclusive of other disabilities and provide services based on need, not on diagnosis. In 2013, Australia made an innovative change to disability services, using a public insurance model. We can learn from their 10 year review and consider issues we should address if we attempt a similar endeavour in Canada.
Day 2: Thursday February 8, 2024
Breakout C (12:45pm-1:45pm EST)
Peer Support for Autistic Adults and Autistic Family Caregivers: Critical Ingredients and Lessons Learned
Presented by: Adeen Ashton-Fogle (Family Engagement Facilitator/Advisor, CAMH); Nathan Dawthorne (Family Engagement Facilitator/Advisor, CAMH); Alex Echakowitz (Youth Engagement Facilitator/Advisor, CAMH); Riley Goldsmith (Youth Engagement Facilitator/Advisor, CAMH); Mirella B (Peer Facilitator, Advisor, CAMH); Lianne G (Family Advisor, CAMH); Yona Lunsky (Scientific Director, Azrieli Adult Neurodevelopmental Centre)
Additional authors: Ami Tint (Psychologist, Private Practice); Johanna Lake (Scientist, CAMH); Teresa Kelly (Engagement Facilitator, CAMH); Yousef Safar (Engagement Facilitator, CAMH)
Autistic adults have higher rates of mental health concerns than other people yet mental health services and supports are lacking for them and their families. One important aspect of mental wellbeing is peer support. This workshop describes the steps taken to design Welcome Everybody, a peer support program for autistic adults, and Coffee Chats, a peer support program for family caregivers, both offered three times virtually in 2023. Our panel, including group facilitators and researchers, will discuss why these types of groups are important and what they learned in the process of designing and delivering them.
What the Heck is Advance Care Planning and Why Should You Care?
Presented by: Karine Diedrich (Director, Advance Care Planning Canada, Canadian Hospice Palliative Care Association (CHPCA)); Merry Parkinson (Project Officer, Advance Care Planning Canada, Canadian Hospice Palliative Care Association (CHPCA))
If your health rapidly changed and you were no longer able to speak for yourself, do you know who would speak for you, and what your wishes would be? These are some questions that Advance Care Planning (ACP) aims to address before a health crisis or decline. Historically, however, ACP has not been accessible to all Canadians. Join members of the Advance Care Planning in Canada team to learn more about ACP from an intersectional and universal design approach. We believe all Canadians deserve access to equitable and inclusive healthcare. Share your thoughts and help us achieve this goal.
Diabetes Continuous Glucose Monitoring Technology – The Impact of Advocacy and Access
Presented by: Arlene Wright (Direct Support Professional, Vita Community Living Services); Calvin Johnson (Person with Lived Experience, Vita Community Living Services (Member)); Angie Gonzales (Health Care Facilitator, Nurse Professional Practice Lead, Surrey Place)
People with IDD have a high prevalence of diabetes. This workshop examines the role of continuous glucose monitoring (CGM) systems in promoting capabilities, integrated care, and support with people with IDD and type 1 diabetes. Diabetes Canada and Health Quality Ontario recommends publicly funded CGM for people with type 1 diabetes, who are unable to recognize, or communicate low blood glucose. CGM’s wearable sensor offers ongoing info that could significantly impact decision-making, increase independence and potentially prevent emergencies.
Using Creativity to Explore the Emotional Experiences of Having Developmental Disabilities: Considerations for Building Empathy
Presented by: Hildy Bennett (Director of Student Experience and Faculty in the Faculty of Behavioural Sciences, Yorkville University)
This workshop reviews literature related to working therapeutically with clients who have developmental disabilities. It also features a summary of related doctoral research. This research focuses on arts-based intervention counselling sessions with adolescents (13-18) who have developmental disabilities and the emotional themes that developed. Additionally, a related fictional story that showcases this therapeutic work is shared to encourage empathy and understanding of the emotional themes that arose during this process. Elements and values of therapeutic story writing are then discussed. Participants finish by exploring their own metaphors and stories, asking questions, and sharing their reflections.
Advocacy Involving Multiple Systems – Unpacking the Complexities
Presented by: Justine Dooley (Family Support Advocate; MA in Leadership, Community Living Victoria); Erika Cedillo (Director of Public Policy and Programs, PhD, Inclusion BC); Cary Chiu (BC Advocate for Quality Service, Office of the Advocate, MSDPR)
As advocates, we see vulnerable people with developmental disabilities and complex needs fall between the cracks within systems, especially during time of transitions. Some end up homeless, street-entrenched, addicted and involved in the justice system. Many people experience extended stays in hospital, unmet mental health needs, inappropriate service referrals, and family/ caregiver burnout. Come and learn ways to build effective, collaborative advocacy teams and unpack the complexities within multiple systems. Work towards strengthening the collective impact of care teams, family and community who support people with complex needs.
Breakout D (2:15pm-3:15pm EST)
The Value of Peer Support for Families with Disabilities
Presented by: Heather Beach (Regional Network Coordinator, Family Support Institute; Family Member)
Family Support Institute of BC is a not-for-profit society committed to supporting families who have a family member with a disability – diagnosed or not. FSI is unique in Canada and the only grass roots family-to-family organization with a broad volunteer base. Learn about the value of the FSI Family Support Model ~ peer to peer ~ and how it can lead to better outcomes for families living with a developmental disability. Description/ Learning Outcomes: Studies on loneliness and isolation, particularly for families with disabilities; Current and common issues/trends these families face, often without a clear solution; Benefits and outcomes of peer-to-peer support for families, providers, and government funded services; What the structure of this looks like, benefits and outcomes with research to back our findings of the model; Real world examples, training of volunteers, offshoot benefits of these support orgs; Strategies for families on how to reach out for such support.
The Role of Planning and Facilitation in Supporting Young People with a Disability Transitioning to Adulthood
Presented by: Anna Bruno (Manager, Facilitation and Planning, Partners for Planning); Gillian Martin (Writer, Artist and Self-Advocate); Andrea Johnston (Independent Facilitator, Partners for Planning)
When a child with a developmental disability leaves high school they experience a major point of transition where families must start over to navigate the system and their community, often resorting to traditional and segregated services. At this transition into adulthood, facilitation and planning can help ensure young people with a disability retain connection to their community and create an inclusive and meaningful life. We aim to demonstrate how being aware and supportive of the contribution of person-directed planning and facilitation will help reduce the stress and fear for young people and families, and improve future outcomes.
The Forgotten Ones: Valuing Psychotherapy for People with Developmental Disability
Presented by: Meghan Josling (Public Speaker and Advocate, Independent); Vicki Hartman (Willowbridge Community Services, Counselling Services Manager); Susan Somogyi Wells (Chief Executive Officer, Family Service Ontario)
People living with a developmental disability often fall through the gaps in care for mental health and domestic violence services. Interventions that address behaviours sometimes overlook the role of trauma, mental health, and loneliness. This session will explore these themes from an individual, organizational, and provincial advocacy perspective that has the potential to revolutionize our current approach in support services. A panel will present a holistic, innovative approach to support wellbeing for individuals living with a developmental disability, beginning with one person’s success story about a traumatic event and how therapy and supportive relationships made the difference to her wellbeing.
Why Speak When No One is Listening Anyways: Thinking About Trauma in Context of Selective Mutism
Presented by: Amanda Sawyer (Physician, CAMH, Surrey Place, Holland Bloorview), Ivona Berger (Family Medicine Resident, University of Toronto)
People with developmental disabilities are at higher risk for experiencing trauma than the general population. This talk will review a series of cases presenting to a psychiatry clinic with speech regression, where trauma was part of the presentation and underexplored. The goal of this talk is to review when and how to ask about trauma, discuss the psychiatric implications of trauma in people with developmental disabilities, are review the role of sexual education in people with developmental disabilities.
Canadian Best Practice Guidance for Quality Community Supports and Care for Adults with IDD and Dementia and their Caregivers
Presented by: Sandy Stemp (Chief Operating Officer (COO), Reena); Tracey Berman (Senior Project Coordinator, Reena); Nancy Jokinen (Adjunct Professor, UNBC School of Social Work); Leslie Udell (Consultant, L Udell Consulting)
Adults with I.D.D. often face many barriers accessing health and dementia care in the community. Reena in partnership with the National Task Group (NTG) Canadian Consortium received funding to adapt and disseminate the “Canadian Guidance for Community Care & Supports for Adults with I.D.D. and Dementia”. 1) Overview of the project’s activities (survey, focus group, global evidence reviews and the work of the advisory committee) 2) Changes to the adaptive guidelines 3) Pre- diagnostic stage 2) Post- diagnostic stage (Early, Mid, Late end) 3) Program support options 4) Review (NTG-EDSD) receive access to adjunct resources and next steps.