Health and Wellbeing in Developmental Disabilities

February 5 & 6, 2025

2023 Speakers

Emcee

Robert Smith

Robert Smith (he/him)
Co-Chair of The Canadian Health and Wellbeing in Developmental Disabilities Conference,
Community Living Ontario Council Treasurer,
Member of Community Living Respite Northumberland,
Chair of Self Advocates Group Northumberland

Twitter / LinkedIn / Instagram / Facebook

Robert Smith, a self-advocate, from Port Hope, Ontario is a member of the Council for Community Living Ontario. Robert is passionate about advocating for people who have an intellectual disability. Robert firmly believes that people can do anything they put their mind to regardless of their challenges. What he enjoys about advocacy is being able to speak his mind and ensure the voices of people who have a disability are heard.

Robert is stepping out of his comfort zone and challenging himself in the role of emcee. As a youth, and adult, being bullied and cyberbullied with blackmail has left him with significant trauma. Robert has taken advantage of the medical resources available to him which has opened his eyes to the inequity of health care for people who are marginalized. Robert is choosing to push himself to speak out on behalf of people who are struggling with mental health challenges. It is his opinion that people have strength within themselves, people are interconnected, and when we share, we grow together, and together we are stronger.

Robert is active in his community, he is an on-line radio DJ, an employee with Home Depot and the Municipality of Port Hope. Robert is an active member of the Staying Connected Network, which encompasses self-advocates from around the world. Robert has received many more awards in sports than there would be space to list here. His favourite sport is sledge hockey and he has recently been notified that his team will be participating in a paralympic event.

Keynote Presentation: Forgotten and Ignored: FASD the Adult Orphan of Disability

International Adult Leadership Collaborative (ALC) of FASD Changemakers
Twitter / Instagram / Podcast / Website

The International Adult Leadership Collaborative (ALC) of FASD Changemakers is a renowned group of citizen researchers and experts who each have FASD. It is made up of CJ Lutke, Myles Himmelreich, Katrina Griffin, Justin Mitchell, Anique Lutke, Emily Hargrove, Maggie May, Jessica Birch, Jacob Dedman and Byron Jones, a group who have experienced all the events commonly associated with FASD but have learned how to overcome obstacles, maximize potential and re-define success. They range in age from 26 to 45. They use their combined lived experience to work together as consultants, advisors, trainers, presenters, mentors, group moderators, committee members, bloggers, and as various university research project team members. As well, they develop and lead their own survey research on adults with diagnosed FASD, the first of which has been published, receiving wide interest by institutions and is currently being used to help focus research directions and questions. Their second survey research project has been widely presented, including to the NIAAA and is currently being written for publication.

Katrina Griffin

Katrina Griffin (she/her)
Self-Advocate

Emily Hargrove

Emily Hargrove (she/her)
Self-Advocate

CJ Lutke

CJ Lutke (she/her)
Self-Advocate

Maggie May

Maggie May (she/her)
Self-Advocate

Ullanda Niel

Moderated by:
Ullanda Niel MD CCFP (she/her)
Family Physician, Scarborough Centre for Healthy Communities & Participation House
Consultant Family Physician, Surrey Place
Professor, Department of Family and Community Medicine, University of Toronto & Queen’s University

Dr. Ullanda Niel is a Family Physician at the Scarborough Center for Healthy Communities in Toronto and Participation House in Markham. She also works as a consultant Family Physician for Surrey Place and she is a professor in the Department of Family and Community Medicine at the University of Toronto and Queen’s University. She has completed a fellowship in the Primary Care of Adults with Intellectual Disabilities at Queen’s University. She participated in creating The 2018 Canadian consensus guidelines on primary care for adults with Intellectual and Developmental Disabilities and clinical resources for the transition of youth with intellectual disabilities to adult care and other point of care tools. Through her community health center, she cares for new immigrants, refugees and people with intellectual disabilities/autism including work at an in-school health clinic.

Keynote Panel: Meaningful Inclusion & Neurodiversity

Arden Duncan Bonokoski

Arden Duncan Bonokoski MSc (she/her)
Executive Director, STEPS Forward
Inclusive Post-secondary Education Society

Website / Website/ Facebook

Arden (she/her) is the Executive Director of STEPS Forward – Inclusive Post-secondary Education Society. STEPS Forward works in partnership with 9 post-secondary education institutions in British Columbia to facilitate the equitable inclusion of students with intellectual and developmental disabilities in the regular academic and social life of campus.

She holds a Bachelor of Science and Master of Science in Community Health Science, from the University of Calgary. She has been working to advance inclusive post-secondary education since 2009 and is passionate about confronting social bias in ways that enable marginalized people to live inclusive lives on their own terms. Arden lives with her partner and daughter in Chilliwack BC which is located on the traditional and unceded territory of the Stó:lō people.

Ali Parsa

Ali Parsa PhD
Founder and CEO of Babylon Health
Website / Blog

Dr Ali Parsa is a British-Iranian healthcare entrepreneur and engineer. He’s the founder and CEO of Babylon, the revolutionary artificial intelligence and digital health company. Babylon’s mission is to put an accessible and affordable health service in the hands of every person on Earth.

By combining cutting-edge AI technology and the best available medical expertise, Babylon gives people 24/7 access to affordable, holistic health services. The company is home to a large, passionate team of scientists, clinicians, mathematicians and engineers—all recruited from over 60 different countries. With over 3 million users, Babylon is transforming the way healthcare works across Europe, North America, Asia, the Middle East and Africa.

Before Babylon, Dr Parsa created Circle, which became Europe’s largest partnership of clinicians, with some £200m of revenue, 3,000 employees and a successful IPO. The Independent Healthcare Awards presented Dr Parsa with an Entrepreneurial Achievement award for establishing Circle. He was given the Royal Award for the Young Entrepreneur of the Year for founding his first business, V&G.

More recently, Dr Parsa was listed in The Times 100 people to watch. The Health Service Journal recognised him as one of the ‘50 most influential people in UK healthcare’. He was featured in the Maserati 100, a list that recognises game-changing entrepreneurs who are disrupting the world of business. Dr Parsa also won the CEO Award by Finance Monthly and ACQ5’s UK Game Changer of the Year. He is a UK Cabinet Office Ambassador for Mutuals and has a PhD in Engineering Physics.

Daniel Share-Strom

Daniel Share-Strom RSW (he/him)
Creative Consultant – Autism, TV Writer, Social Worker, Author
Individual Therapist & Chilling Group Co-Facilitator, Dori Zener and Associates

TedTalk / YouTube

Daniel Share-Strom is a Registered Social Worker who believes in a strengths-based approach to helping Autistic youth and young adults improve their mental health and live meaningful lives. Since 2004, he’s used his own lived experience of being on the autism spectrum to advocate for improved understanding and better social, academic, and employment inclusion of neurodivergent individuals through his public speaking, workshops, and writing. Daniel favours a positive psychology-based approach to helping clients become more satisfied with their lives on their own terms and is well-versed in mindfulness-based methods of mental wellness. In addition to his role as an Individual Therapist, Daniel is a facilitator for our Chilling on the Spectrum support and social group for Autistic young adults. A huge believer in the power of positive messaging in children’s media content, Daniel is the author of Do You Want to Play? Making Friends with an Autistic Kid and a writer and creative consultant on the TV show Thomas and Friends: All Engines Go!, where he helped create the joyful and adorable Autistic character, Bruno the Brake Car.

Muhammad Irfan Jiwa

Moderated by: Muhammad Irfan Jiwa MD (he/him)
Family Medicine Resident, McMaster University
Twitter / LinkedIn / YouTube

Irfan Jiwa is a medical resident in family medicine at McMaster University and is involved in various research and advocacy efforts at the Azrieli Adult Neurodevelopmental Centre at CAMH. As an older sibling of someone with both an intellectual disability and autistic spectrum disorder, Irfan has been passionate about seeking out experiences in the world of IDD to improve healthcare for people with IDD. Specifically, Irfan is interested in the education received by healthcare professionals and trainees in IDD and how this can be better optimized, supporting people with IDD to be more involved in research efforts and endeavours, and ensuring healthcare information and resources are made accessible for people with IDD. Irfan completed a B.Sc. in Chemical Biology at McMaster University after continuing on to gain his M.D. at University of Toronto and then returning back to McMaster for family medicine residency. After completing his residency in family medicine, Irfan will be pursuing an enhanced skills training in Developmental Disabilities to be able to better support patients with IDD in his future practice.

Keynote Panel: End-of-Life Planning – Conversations about Death and Dying

Angie Gonzales

Angie Gonzales RN MN (she/her)
Health Care Facilitator and Nurse Professional Practice Lead, Surrey Place

Angie is a Health Care Facilitator and Nurse Professional Practice Lead at Surrey Place. She has Bachelor of Science Honours degree in Life Sciences, Bachelor of Nursing Science and Master of Nursing degree in Community Health from the University of Toronto. Prior to Surrey Place, Angie worked at Holland Bloorview Kids Rehab Hospital in Acquired Brain Injury inpatient unit and Neuromuscular outpatient clinic. She now provides nursing consultation care with adults with Intellectual/Developmental Disabilities. She is currently also part of ECHO Ontario Adult Intellectual & Developmental Disabilities program.

Jan Temple-Jones

Jan Temple-Jones BA MDiv
Manager, Spiritual Care Department; Ethics Committee Co-Chair; CASC/ACSS Certified Spiritual Care Practitioner
Grey Bruce Health Services

Jan is the Manager for Spiritual Care for GBHS, SBGHC, HDH, GBH and PHCT (HCCSS SW). Jan worked for many years as a Spiritual Care Practitioner, providing direct client care primarily to clients in Inpatient Mental Health, Long-term Care and Hospice Palliative Care. She has a Master of Divinity degree, is Certified Spiritual Care Practitioner and a Provisional Supervisor Educator with the Canadian Association for Spiritual Care (CASC/ACSS). Jan is also a parent advocate for her adult son who was born with Down Syndrome.

John Guido

John Guido (he/him)
Accessibility and Inclusion Coordinator, L’Arche Canada

John Guido has shared life in community with persons with and without intellectual disabilities in the two L’Arche communities in the Greater Toronto Area since 1985. He has carried many roles in the communities over the years including nearly two decades as Community Leader in Toronto and Regional Leader for the nine L’Arche communities in Ontario. Over the years, he has played a lead role in the development of L’Arche resources to support persons with intellectual disabilities and those who love them in serious illness, aging, dying, and grief. Beyond his paid roles, John has walked with several members in their end-of-life journeys, sometimes facilitating their circles of support.

Megan Primeau

Moderated by: Megan Primeau MSc (she/her)
Conference Director & Academic Program Director,
Continuing Professional Development, Temerty Faculty of Medicine, University of Toronto

Twitter / LinkedIn

Megan currently supports Continuing Professional Development, Temerty Faculty of Medicine University of Toronto, as the Conference Director for the Canadian Health and Wellbeing in Developmental Disabilities Conference and the Academic Program Director for The Canadian Children, Youth and Communities (CCYC) In | Equity Conference. She is also the founder of Educate Facilitate Consulting Services and is a part-time instructor at Humber College in the Faculty of Social and Community Services and the Centre for Education, Language and Professional Practice. Megan brings over 20 years of experience facilitating the design, delivery, and evaluation of education and knowledge transfer initiatives in healthcare and social services, with a specific focus on mental health and developmental services. Megan has completed a Certificate Program in Adult Training and Development (OISE, University of Toronto) and Knowledge Translation Professional Certificate (The Hospital for Sick Children). She is also a Certified Training and Development Professional (CTDP)™ with (and is a member of) the Institute for Performance and Leaning, plus is a member of the International Association of Facilitators (IAF).