Health and Wellbeing in Developmental Disabilities

Additional authors: Natasha Bruno (Clinical Research Project Manager, The Hospital for Sick Children); Julia Orkin (Staff Physician and Medical Director of the Complex Care Program, The Hospital for Sick Children); Diane de Camps Meschino (Staff Psychiatrist and Founder of the Reproductive Life Stages Program, Women’s College Hospital); Elisabeth Wright (Staff Psychiatrist, Women’s College Hospital); Kathy Netten (Social Worker, The Hospital for Sick Children); Eyal Cohen (Staff Physician, The Hospital for Sick Children); Neda Askari (Staff Psychiatrist, Women’s College Hospital)

We will outline the development and evaluation of a novel, integrated stepped care model of mental health support for parental caregivers of children with medical complexity within a paediatric program. We will describe the unique mental health challenges faced by caregivers, and the Caring for the Caregiver model, which provides caregivers access to psychosocial, psychotherapeutic and psychiatric supports to address varying levels of mental health concerns. We will share feasibility outcomes of the model, and clinical diagnostic and treatment outcomes of caregivers. Participants will gain insights into innovative approaches to integrating mental health care for caregivers within a paediatric context.

People with intellectual disabilities have equal sexual and reproductive health rights and access to health care as people without disabilities (UN, 2006), yet there is a high degree of variability in people with intellectual disabilities’ levels of sexual knowledge. This workshop will present the findings of a study focused on sexual health information for Special Olympics athletes, topics of interest and best approaches to fill these knowledge gaps. Throughout the presentation we will explore ways that health care providers may encounter sexual health in practice, ways to support sexual health education, and discuss the perspectives of individuals with intellectual disabilities.

Additional authors: N. Esme Marquis (Physician, Island Health); Kimberlyn McGrail (Professor, University of British Columbia); Yona Lunsky (Scientific Director, Azrieli Adult Neurodevelopmental Centre)

The authors examined population-level administrative health data from the Ministry of Health in British Columbia. Using these data this presentation will provide evidence of health care usage by youth aged 15-24 as they transitioned from pediatric to adult services. Specifically, we will present information on medically necessary dental procedures, visits for gynecological issues, mental health diagnoses, the use of emergency services and prescription medications, including antipsychotics. In addition, we will present information specifically about youth with fetal alcohol syndrome.

Additional authors: Goldie Choudhary (Program Evaluation Coordinator, Research and Evaluation, Surrey Place); Aliyah Deane (Social Worker, TRE-ADD, Surrey Place); Raimond DiDonato (Family Support Coach, TRE-ADD, Surrey Place); Vikram Dua (Child and Adolescent Psychiatrist, TRE-ADD, Surrey Place); Adriana Marini (Manager, TRE-ADD, Surrey Place); Emelin Mathew (Registered Nurse, Medical Services, Surrey Place); Christine McGrann (Family Support Coach, TRE-ADD, Surrey Place)

School-aged clients with autism and an intellectual disability exhibiting complex behavioural challenges (e.g., aggression, self-injury, property destruction), risk negative consequences that impact their academic/school success (e.g., modified hours, isolation, zero instructional demands, expulsion). The Treatment, Research and Education for Autism and Developmental Disorders (TRE-ADD) program, delivered by Surrey Place in conjunction with local school boards and predominantly in school settings, takes an interdisciplinary treatment approach (e.g., behaviour analysts, teaching staff, psychiatry, developmental pediatrics, nursing, social work, service coordination) to ameliorate these behaviours. This workshop will introduce the program, including case studies and program evaluation results to date.

Additional authors: Kayla Kostal (PhD Student, University of British Columbia); Margherita Cameranesi (Assistant Professor, Saint Mary’s University); Lindsay McCombe (Manager, St.Amant Research Centre)

We interviewed thirteen direct support workers and two family members of adults with intellectual and developmental disabilities who transitioned from a long-term care facility to community living for at least three years. We explored how the health and quality of life (OoL) of these individuals changed after moving into community homes. Thematic analysis of the data revealed improvements in some aspects of health and QoL, while other areas still require advancements and further research. These findings guide the provision of meaningful services and support for persons with intellectual and developmental disabilities, promoting their right to health equity and inclusion.

Reena in partnership with the NTG Canadian Consortium developed a new guide- Canadian Best Practice Guidance for Quality Community Supports and Care for Adults with Intellectual Disabilities and Dementia and their Caregivers”. This session will focus on sections of the guide and the adjunct resources that were developed to support the guide.

Come learn multiple stories about how Planned Lifetime Advocacy Network (PLAN)’s members are supported by networks of family, friends and professionals. These networks have connected and collaborated for decades and are now supporting intergenerational planning increasing the longer-term safety and security of our members across BC’s Lower Mainland. We will share specific stories of how networks have coordinated our members’ long-term safety and security

The Occupational Therapy (OT) adult team at Surrey Place has grown, recognizing the need for this specialized service for individuals 18+ with developmental disabilities. This workshop will discuss the role and approach of OT; who we are and what we do within our scope of practice. OT frames of reference will be shared to illustrate how we are well situated to support quality of life improvement. Information will be shared of when to refer to OT, to support a client’s health/wellbeing. Examples will be provided of collaborative work between Occupational Therapists and other services providers to support positive health outcomes.

Special Olympics Canada, a global organization providing sports training and competitions for individuals with intellectual disabilities (ID), funds research to support the health promotion for people with intellectual disabilities. However, findings are not always shared effectively with the people who need it most: the athletes, families, and coaches. In this workshop, our panel of Special Olympics Canada staff, athletes, researchers and coaches, will share our experiences and stories in co-creating a range of easy-to-understand and engaging knowledge products and what we learned about which strategies are most successful.

Contrary to popular belief, pregnancy is not uncommon in women with IDD (Brown, 2024). To support these women, research has identified the need to provide accessible perinatal information (Potvin et al 2016; 2020). The Surrey Place Parenting Enhancement Program (PEP) has developed and is piloting a group-based adapted curriculum for women with IDD during the prenatal and postnatal periods. The groups are led by two PEP Therapists, a Peer Leader, and various subject specialists (e.g., nurse, midwife, OBGYN, nutritionist, etc.). This workshop will introduce you to the population of interest, the Parenting Enhancement Program, and the new perinatal groups.

Despite increased access to post-secondary education (PSE), neurodivergent students remain less likely to graduate than their neurotypical peers. This session presents the most comprehensive national dataset on neuroinclusivity in Canadian post-secondary education. We report on the findings of the first national survey of neurodiversity in post-secondary education, including 400 neurodivergent post-secondary students and recent graduates and 78 in-depth interviews with neurodivergent students and staff and leaders working in accessibility services. We explore student, staff, and leadership perceptions to highlight the policies and practices that hinder or promote neuroinclusivity and offer data-driven, actionable recommendations to improve accessibility for neurodivergent students.

Additional authors: Margaretta Patrick (Subject Matter Expert, The Centre for Civic Religious Literacy)

How can agencies best support people served (PSs) in their journey towards ever-greater flourishing? This workshop presents findings from a BC-based project with three agencies (posAbilities, BACI, and Kinsight) that question “how” and “if” it is appropriate to include spirituality (religious or non-religious) in the conversation of flourishing. Having found that we should move beyond the question of “if” we should include spirituality to “how,” this workshop will present findings specifically from PSs who participated in a four months-long Curiko experience about spirituality.

Additional authors: Yona Lunsky (Scientific Director, Azrieli Adult Neurodevelopmental Centre); Alyson Mahar (Assistant Professor, Queen’s University); Shay-Lee Bolton (Assistant Professor, University of Manitoba); Deepa Singal (Scientific Director, Autism Alliance of Canada); Shahin Shooshtari (Professor, University of Manitoba)

The organization of mental health services, and disability support programs vary across different jurisdictions in Canada. Reports on mental health of adults in Manitoba do not provide information on the prevalence of mental disorders among those with intellectual and developmental disabilities (IDD). Using population-level administrative data from the Research Data Repository of the Manitoba Centre for Health Policy, we examined and compared the prevalence of any mental disorder, psychotic disorders, mood and anxiety disorders, and substance use disorders between Manitoba adults with and without IDD. Adults with IDD had a significantly higher prevalence of mental disorders compared to persons without.

Additional authors: Sandy Stemp (Chief Operations Officer, Reena); Jeanny Scantlebury (Vice President, Adult Services, Surrey Place); Ziv Har-Gil (Health and Operations Project Manager, Reena); Mario Longo (Vice President, Quality and Strategic Initiatives, CHATS – Community & Home Assistance to Seniors)

This workshop will showcase a collaborative cross-sectoral strategy developed by the Provincial Network Health Strategy and Engagement Working Group to improve health outcomes for individuals with intellectual and developmental disabilities (IDD). It will focus on practical solutions for improving health system navigation, care transitions (Home Care, ALC), infection prevention and control (IPAC), and the use of data to drive policy and program development. Attendees will gain insights into successful partnerships and learn actionable steps to enhance health equity for this vulnerable population.

This workshop explores the intersection of disability, race, and mental health, highlighting the unique challenges faced by marginalized communities. Participants will learn about the impact of systemic barriers and gain insights into strategies for fostering inclusivity and support. Engaging discussions and case studies will encourage reflection on community well-being.

For the first time, in 2024, Advance Care Planning Canada polled people with disabilities about ACP and the barriers they face to meaningfully participating in this process. A key barrier identified was the perceived lack of capacity of individuals living with disabilities. ACP Canada’s project, “Making Advance Care Planning More Accessible” has created new resources that focus on accessibility, removing barriers, and demonstrating the importance of Supported Decision-Making. Join the ACP Canada team to learn more about these resources, the project, and how every individual, family, and provider can work together to ensure equitable, accessible, and person-centred healthcare.