A mental health podcast where nothing is off the table. Join self advocate and hosts, Victor Pereira and Daniel Share-Strom as they explore topics and how they relate to individuals with intellectual and developmental disabilities.
Listen on Spotify or Apple Podcasts.
Parent Perspective with Lee Steel and Amy Baskin
May 20 - 27 minutes
Parents and caregivers play an essential role in the lives of their children with IDD, helping to ensure their overall health and wellbeing, and supporting their social and emotional needs. The complex role of caring for a family member with IDD can be both a challenging and rewarding experience for caregivers and their families.
In this episode, we delve into the parent’s perspective of caring for a child with an intellectual or developmental disability, talking to CAMH's own Lee Steel and Amy Baskin. Join us and find out the highs and the not-so-highs of being a parent to an adult child with IDD, and the life lessons learned along the way.
Lee Steel is a Family Advisor at the Azrieli Adult Neurodevelopmental Centre, where she brings the parent perspective to all of our research endeavours. Lee has been involved in the development and facilitation of the Azrieli Mindfulness and Acceptance and Commitment Training (ACT) Groups for Caregivers.
Amy Baskin is a freelance writer and educator who has supported the creation of the Azrieli Centre’s mindfulness workbook and facilitated our most recent COVID-19 virtual course for family caregivers Course targeted at improving the mental health of caregivers during the pandemic.
To view the video recordings from our course, Mental health for adults with developmental disabilities during COVID: A virtual course for family caregivers visit the course webpage and our YouTube channel. You can also visit our H-CARDD COVID page for up-to-date vaccine information and other resources. The Family Matters Toolkit includes tools and resources specifically for family caregivers, to help you and your loved one prepare and participate in health care visits.
The AM HeLP Guide with Courtney Weaver and Alex Echakowitz
May 6 - 27 minutes
On this week’s episode of IDD: Get to Know Me we speak to Courtney Weaver and Alex Echakowitz about the just-released Mental Health Literacy Guide for Autism, created by the Autism Mental Health Literacy Project (AM-HeLP). The guide is designed to “increase awareness and share knowledge around issues related to Autistic mental health. This guide is meant to be read by everyone, but most importantly by Autistic adults, family members, professionals, policy-makers and leaders.”
Alex and Courtney share their experience of working over the past two years with over 20 Autistic Advisors from across the country and researchers to help develop this guide. Tune in to hear directly from Alex and Courtney why this guide is so important and how they hope it will be used. You will also hear a fun fact you may not know about Alex, Courtney and our hosts! The Mental Health Literacy Guide for Autism was created by York University’s Dr. Jonathon Weiss and CAMH’s Dr. Yona Lunsky, as well as research staff and Autistic advisors. For more information and to download a copy of the guide, visit https://www.yorku.ca/health/lab/ddmh/am-help/.
The Sibling Collaborative with Helen Ries
April 22 - 31 minutes
Siblings of people with disabilities often encounter unique challenges throughout their lifespan but their concerns are not always heard or acknowledged. In this week’s episode of IDD: Get to Know Me, Helen Ries, the founder of The Sibling Collaborative, joins us to share her journey as a sibling to someone with IDD and what drove her to develop The Sibling Collaborative.
The Sibling Collaborative is a national organization that supports people who are siblings to someone with a disability, engaging with over 500 siblings from across Canada. The idea for the Collaborative emerged from Helen’s experience of becoming a caregiver for her sibling and the lack of support and information available to her. The Sibling Collaborative strives to support siblings who are going through similar experiences by providing connection, resources and research. Most recently, it has started to host virtual meetups to support siblings during the COVID pandemic.
The Sibling Collaborative has worked with the Azrieli Adult Neurodevelopmental Centre at CAMH to study these special relationships. Recently the Azrieli Centre published a report The Experiences of Siblings of People with IDD during the COVID-19 Pandemic with support from The Sibling Collaborative.
In this episode you will hear whether Helen would rather be the smartest or funniest person in the room (spoiler alert: she says neither!), her experiences as a sibling to someone with a disability, and what led her to start The Sibling Collaborative. To learn more about The Sibling Collaborative and how to get involved, visit their website or join their mailing list. You can also follow The Sibling Collaborative on Twitter and Facebook @SibCollab!.
Sibling Stories with Nicole Bobbette and Victoria Cusumano
April 8 - 27 minutes
Sibling relationships are some of the most important in our lives-doubly so when autism or IDD are involved. In this episode, Victor and Daniel chat with Victoria Cusumano and Nicole Bobbette on what it is like growing up with a differently abled sibling and how it can be different from typical sibling relationships. Victoria and Nicole reveal what their siblings have taught them, and how they have enriched their lives. We also hear their answer to this week’s ice breaker “If you could, what age would you stop aging at and why?.”
Victoria is a fourth year psychology student at the University of Toronto. She has worked at the Azrieli Adult Neurodevelopmental Centre at CAMH in various roles over the past two years, supporting self-advocates involved in research. Victoria has also been a basketball coach with Special Olympics Ontario for five years. Most importantly, Victoria is a sister to Vanessa, who has Down syndrome. Victoria and Vanessa live together along with their brother and parents at their family home in Toronto, Ontario.
Nicole Bobbette is an occupational therapist who has been working with people with IDD for the past 13 years. Nicole just completed a postdoctoral fellowship at the Azrieli Adult Neurodevelopmental Centre and is now an assistant professor at Queen's University where she teaches in the occupational therapy program. Nicole is passionate about collaborating with people with IDD in research to promote health and improve health services. Nicole’s primary and most important role is being an older sister to Allison, who has an IDD and lives semi-independently in Barrie, Ontario.
Navigating the Education System
March 25 - 20 minutes
Advocacy and Inclusion in the classroom is crucial to people with IDD’s success in the education system. In this episode of IDD: Get to Know Me, Victor and Daniel explore why this is so important and the barriers that exist in creating inclusive classrooms. Victor takes us back to his high school experiences, when teachers really made a difference—and how they did that. Daniel reflects on his experience of completing his degree in communications at University, and his struggles for acceptance and accommodation. Victor and Daniel highlight the challenges of adapting to new social environments and how neurotypical people can better support those with IDD in the classroom. Join Victor and Daniel as they share a conversation about their experiences in the classroom, navigating the education system, and fighting for their right to tailored supports and transition services.
IDD on the Frontlines with Kory Earle
March 11 - 30 minutes
In our third episode of "IDD - Get to Know Me", we interview People First of Canada President and current frontline worker Kory Earle. He discusses what it's like to support people with IDD during the COVID-19 pandemic and what drove him to join this line of work during the pandemic.
Kory Earle works as a screener at a Long Term Care home in Ontario. In this episode Kory shares what being a frontline worker in a pandemic is like, and what he has found most rewarding. Kory is also the President of People First of Canada (https://www.peoplefirstofcanada.ca/), a national self-advocacy organization that empowers and prioritizes the voices of people with intellectual and developmental disabilities.
Paraphrasing Kory’s words: People with IDD have always had these issues; the pandemic has made these issues more visible and apparent to others. He is also very passionate about mental health, and has spoken to this in policy forums as well as during a course for self-advocates on Mental Health during COVID-19.
Once you've had a listen, watch out for Episode 4, where Daniel and Victor discuss their experiences growing up in Ontario's education system as people with IDD. Kory and Victor spoke at a Federal Policy Forum on International Day of People with Disabilities, where they shared the importance of mental health support for this population and how our course "Mental health for adults with developmental disabilities during COVID: A virtual course for self-advocates" offered much needed support and resources.
Perspectives on the Pandemic with Sue Hutton
February 26 - 22 minutes
In Episode 2 of “IDD – Get to know me”, Daniel and Victor interview Sue Hutton, a developmental disability social worker and mindfulness guru, on how the COVID-19 pandemic has impacted people with intellectual and developmental disabilities. Key takeaways from their discussion: people’s mental health is suffering, the government could be doing more, and this thing can’t be over soon enough. Tune in for Sue’s answers to critical questions of the day.
Sue Hutton has worked in developmental services for 30 years. After working at Community Living Toronto in direct service, rights training and advocacy, Sue moved to ARCH disability law center where she coordinates Respecting Rights, a legal rights education project led by persons with disabilities. Sue recently joined the Azrieli Adult Neurodevelopmental Centre at CAMH as a social worker and leads several mindfulness research groups.
In this episode, Sue shares her experience working with Respecting Rights at ARCH Disability Law Centre. Sue also shares insights from an article coming soon (Feb/Mar 2021) to The Journal of Qualitative Social Work . If this conversation piqued your interest, check back in two weeks for Episode 3, where we interview People First of Canada President Kory Earle on what it’s like to be someone with IDD who’s also working on the frontlines of the pandemic. Follow Sue on Twitter @suehutton_msw and Facebook @suehuttonmindfulness Follow Respecting Rights on Facebook: @respectingrights. Check out Sue's website: https://www.suehuttonmindfulness.com/.
Get to know us!
February 26 - 13 minutes
In this inaugural episode of IDD - Get to know me, you'll meet our self-advocate hosts: peer support worker, social worker, writer, and motivational speaker Daniel Share-Strom and actor and Azrieli advisor Victor Pereira. You'll find answers to biting questions such as 'What's the work experience like for people with intellectual or developmental disabilities and autism?' and most importantly, 'Just how much does a polar bear weigh?'