IDD: Get to know me

This week Victor and Daniel talk to Danielle Strnad, the Executive Director and Founder and Senior Arts Facilitator Morgan Joy of DramaWay and DramaWay Productions. DramaWay Productions is a non-profit arts program for all abilities. As Morgan says, “DramaWay is a place that people come together to grow and create regardless of their backgrounds or abilities”. DramaWay and DramaWay Productions offers inclusive arts classes that range from visual arts, drama, physical activity and more. Danielle shares how she developed this company and how it has grown since its creation in 1999.

Heidi is a Special Olympics athlete and a leader. She has been a key member of many leadership committees including People First of Canada, PEI People, Special Olympics Canada’s Athlete Leadership Council, the Global Athlete Leadership Council, as well as the Athlete Representative for the Special Olympics PEI Board of Directors.

Heidi joins us to discuss her various leadership roles and how she became the strong leader that she is today. Heidi also shares the importance of Special Olympics. Special Olympics provides programs for people with disabilities over the age of two and has many sports programs including both individual and team sports. Some of Heidi’s personal favourite sports include bowling, golf, and snowshoeing. 

On this episode, we speak with Lawyer and Disability Rights Advocate, Kerri Joffe. Kerri is a lawyer at ARCH Disability Law Centre. ARCH Disability Law Centre is a specialty legal clinic that practices exclusively in disability rights law. Respecting Rights is an initiative at ARCH, where self-advocates participate in programs to learn more about law and how to get involved with accessible rights education. 

https://archdisabilitylaw.ca/

This week we have a special guest, Dr. Alan Santinele Martino. Alan is an instructor in community rehabilitation and disability studies at the University of Calgary. He researched the romantic and sexual lives of adults with intellectual and developmental disabilities in Ontario for his PhD at McMaster University. We have Dr. Martino on this episode to discuss his research and the experiences of people with intellectual and developmental disabilities in intimate relationships. Dr. Martino highlights stories from people with disabilities who have advocated for themselves or others and shares why this work is so important to him. He also shares what the barriers are to his research and sex education for people with intellectual and developmental disabilities.

Dr. Martino’s website: https://alanmartino.com/

Dr. Martino’s Twitter: https://twitter.com/AlanSMartino?s=20&t=DiV4e_kzatEjIgxrD2UqSw

Dr. Martino's Recent Publications:

Santinele Martino, A. (2022). Ethically important moments: Researching the intimate lives of adults labeled/with intellectual disabilities. Qualitative Research.

Santinele Martino, A. & Kinitz, D. J. (2022). “It’s Just More Complicated”: The Experiences of Adults with Intellectual Disabilities When Navigating Digital Sexual Fields. Cyberpsychology: Journal of Psychosocial Research on Cyberspace. https://cyberpsychology.eu/article/view/15180/16710

Brennand, E. & Santinele Martino, A. (2022). Disability is Associated with Sexually Transmitted Infection: Female Sex, Severity and Disability Domain are Important Risk Factors. Canadian Journal of Human Sexuality. https://doi.org/10.3138/cjhs.2021-0053

Welcome back for another season of IDD: Get to know me! In the first episode of our second season, podcast hosts Daniel and Victor interview Dr. Yona Lunsky, the director of the Azrieli Adult Neurodevelopmental Centre. Together they talk about why inclusion is so important and different ways they are making the Azrieli Adult Neurodevelopmental Centre, and research at CAMH more inclusive of people with intellectual and developmental disabilities.

Yona shares what motivated her to get involved and continue working in this field for over 20 years. She also discusses the importance of including self-advocates in her work. Yona shares some tips on how she makes positions accessible to self-advocates and what we can do to create accessible and inclusive work environments.

Want to get involved with projects at the Azrieli Adult Neurodevelopmental Centre? Email us at [email protected]

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:

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/

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!

Like what you heard this week? Don’t forget to subscribe and review our podcast wherever you are listening; this will help us grow our audience.

Have topic ideas or feedback you’d like us to hear? Send us an email at [email protected].

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.

Tune in next time when we speak with Helen Reise from the Sibling Collaborative. 

You can follow Nicole on Twitter (https://twitter.com/nicole_bobbette).

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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.

Stay tuned for our upcoming episode on the sibling perspective with Nicole Bobbette and Victoria Cusumano.