In this episode we hear from three of the authors (Hannah, Sahana, and Shelly) about their article titled "Disability Education in Medical Schools: A Paradigm Shift for Inclusive Care" published in the Fall 2024 issue of the Developmental Disabilities Network Journal. Full transcripts of this episode are available here in English and in Spanish.

In this episode, Matt talks to Megan Best, Amanda Johnston, Sarah Demissie, coauthors on the article, "Conducting a Pilot Evaluation of a Civic-Engagement Program for Youth with Disabilities" which was published in the fall 2024 issue of DDNJ. The researchers behind this article discuss why it is important for individuals with disabilities to be engaged in self-advocacy, what policies impact people with disabilities, and implications for research. A full transcript of the podcast interview is available in English and Spanish.

Megan is a fourth-year doctoral candidate at the University of Illinois Urbana-Champaign. Her research focuses on empowering self-advocacy for young adults with intellectual and developmental disabilities. Prior to pursuing a PhD in Special Education, Megan worked for 10 years as a high school special education teacher and administrator in the Chicagoland area.

Amanda Johnston is a doctoral candidate at Vanderbilt University. Her research interests include parental advocacy, knowledge of systems and supports, and family-professional partnerships, specifically those involving families from low-resourced backgrounds.

Sarah is currently a Self-Advocacy Researcher working remotely through Vanderbilt University located in Tennessee. She has been involved in different research projects like the Spencer Project, collaborating with a variety of other researchers with and without disabilities. Sarah also has a disability. Sarah has worked with individuals with disabilities, including youths with disabilities. She has done lots of presentations about her experiences involving self-advocacy as well and also likes to learn things.

Resources mentioned in this episode:

In this episode, Matt interviews Drs. Mary Beth Bruder and Tara Lutz from the University of Connecticut Center for Excellence in Developmental Disabilities (UConn UCEDD); Leadership Education in Neurodevelopmental and related Disabilities program (UConn LEND) about their article, "Barriers to Health Care Among Adults with Disabilities in Connecticut" in the Fall 2024 issue of the Developmental Disabilities Network Journal.

The conversation was insightful and covered many timely issues about health disparities for people with disabilities, physical barriers that make accessing healthcare harder for people who use wheelchairs, walkers, or have other mobility limitations, and other challenges in accessing health care for people with disabilities. They also discussed the lack of training for medical professionals about disabilities, which can lead to more problems in getting adequate healthcare.

A full transcript of this episode is available in English and in Spanish.

Dr. Bruder and Dr. Lutz shared this page of resources about health care for people with disabilities. 

In this episode, we hear from Micah Peace Urquilla (they/them) about the Person Experiences Interview Survey (PEIS), a tool developed to engage patients with IDD in their own care. We talked about how the mental healthcare system has more barriers and is more difficult to navigate and receive quality care for people with disabilities. We also discussed how the PEIS aims to engage patients with IDD in their care to ensure it more person-centered. You can read Micah's article in DDNJ here.

A full transcript is available here.

Our Winter 2023-2024 special issue was dedicated to the wellbeing and mental health aspects of persons with IDD. We were interested in all facets of this topic, with a particular focus on engagement with people with IDD, integrated wellbeing and mental health assessment and treatment approaches, inclusive research, and positive mental health. We were lucky to have Drs. Joan Beasley and Luke Kalb serve as the guest editors for this issue. Matt interviewed them about this topic and how the issue came together. A full transcript is available here.

You can read Joan and Luke's editorial and all the articles in the special issue here.

Dr. Luther (Luke) Kalb received his PhD from the Department of Mental Health at the Johns Hopkins Bloomberg School of Public Health. During his studies, he received an NIMH Children’s Mental Health Services research fellowship, the Morton Kramer award for excellence in Epidemiology and Biostatistics, an F-31 award through NICHD, and was named a Wendy Klag Center Scholar.

National Research Consortium on Mental Health in Intellectual and Developmental Disabilities

In this episode Matt interviews Julia and Paritosh about their recent article entitled "Reimagining Disability, a Call to Action" Published in the 2023 open issue of DDNJ. In this article and in the podcast, they discuss why professionals across various fields should move towards the social model of disability, rather than the medical model. This conversation provides more insight into why they see a need for this shift, a discussion of systemic barriers for people with disabilities, and how this shift in perspective could improve the work we do and the impact for attitudes towards disability. A full transcript is available here in English. 

Julia Pappageorge is an interdisciplinary educator and researcher based in Chicago. She received her Master of Education in Instructional Leadership, with a specialization in Educational Studies from the University of Illinois at Chicago. Her research explores the ways cultural, political, and economic factors influence urban education and perpetuate social inequalities. Julia delves into these dynamics to understand their impact on educational equity, access, resource allocation, and curriculum development. As a scholar-practitioner of critical and sociocultural pedagogies, she is dedicated to bridging theory and practice; she is also committed to studying, applying, and learning from transformative educational approaches. Beyond her professional endeavors, Julia enjoys spending time with loved ones, exploring museums and forest preserves, searching for meteorites, and reading poetry and speculative fiction.

In this episode, Matt Wappett interviews Drs. Richard Chapman and Jessica Schuttler about their recent article, Applying the Self-Determined Learning Model of Instruction to the Psychotherapeutic Context for People with Intellectual/Developmental Disabilities. They talk about how this model was and can be used in clinical practice and the importance of self-determination, as well as the motivations behind their work. A full transcript is available here in English and in Spanish. 

Links mention in this episode include:

selfdetermination.ku.edu

tinyurl.com\SDMPower

Richard Chapman is the associate director for disability leadership at the partnership for people with disabilities at Virginia Commonwealth University. He completed a postdoctoral research Fellowship at the University of Kansas in Lawrence Kansas studying self-determination intervention and assessment. He considers himself a disability studies scholar. He conducts research in the area of self-determination. He is a licensed mental health counselor in the state of Florida. He is also a certified rehabilitation counselor. He has a bachelors degree, master’s degree, and a PhD all from the University of South Florida in beautiful Tampa Florida. He currently lives in Richmond Virginia.

In this episode, we hear from Shari Cooper self-advocate and author of Loving My Skin: A Self-Advocate’s Perspective from Dayton, Ohio.  Shari has worked in the disability field a very long time, tells us how she became involved in self-advocacy, and how she thinks it could be valuable for others to become involved. You can listen to this episode here or check out a transcript in English or Spanish. 

Shari is a strong advocate for everyone who lives with a disability, and her resume proves it. In her position as Public Relations Assistant for Goodwill Easter Seals Miami Valley, Shari is their “blogger-in-chief.” (Check out her blog.) In 1995, Shari graduated from Sinclair Community College with an Associate Degree in Disability Intervention Services. She’s also a columnist for the Dayton Daily News Editorial pages and an award-winning speaker. She even gave a TED talk at TEDx Dayton in 2014 called “Are you OK with yourself?” But the role she cherishes most is that of disability awareness advocate. Shari’s impact as an advocate is far-reaching. She has served on the Ohio Developmental Disabilities Council and currently serves on The Disability Foundation Board. Shari currently was selected 2019 Women In Business Networking’s Top 25 Women To Watch.

In this episode, Matt interviewed Tawara Goode about the article she coauthored in the special issue of DDNJ focused on diversity, equity, and inclusion. This article was entitled, "Advancing Diversity, Equity, and Inclusion in Developmental Disabilities: The Essential Role of Leadership for Cultural and Linguistic Competence" We learned what lead Tawara to do this work, more information about the project featured in the article, and about her motivation to do this work. A full transcript of this episode is available here in English and in Spanish.

Tawara Goode is an associate professor in the Department of Pediatrics, Georgetown University Medical

In this episode, we hear from two of the authors of the article titled, "Paths to Equity: Parents in partnership with UCEDDs fostering Black family advocacy for children on the autism spectrum" which was published in the 2023 special issue on diversity, equity, and inclusion. We were so thrilled to discuss this important work with Ida and Dr. Morgan and also learn more about them as people and why they are invested in what they do. A full transcript of this interview is available here in English and here in Spanish.

Ida Winters is the mother of 3 wonderful young men who all live with special healthcare needs and one who received a late diagnosis of Autism. Ida is committed to being that person that she needed during her and her children’s journey to and through a diagnosis and being an avid advocate for change at home, in her community, and wherever she is needed. Ida strongly believes that the only way for change to truly happen is by educating and empowering the underserved, underprivileged, underrepresented, as well as the overlooked populations, and changing the narrative from “underserved to well served”!

Ida is the founder of Sankofa Midwest and currently works at the University of Wisconsin Madison – Waisman Center as an Outreach Associate, Wisconsin Care Integration Initiative (WiCII) Family Engagement Specialist, Ida also works with WI LEND as a Family Peer Mentor and LCS Co-facilitator. Ida is former AMCHP Family Leader. Ida is a LEND graduate and was named AUCD’s 2020-2021 Emerging Leader for Wisconsin. Ida is also part of the WI. LEND planning committee, community engagement, ECHO Autism and Anxiety, Accelerated Equity Learning Community (AELC)team with the National Maternal Child Health Workforce Development Center (WI.). Ida also currently works with Autism Society of Southeastern WI. ASSEW.

Ida is a member of the National Resource Center for Patient/Family-Centered Medical Home Health Equity Subcommittee (NRC-PFCMH). In the past Ida has worked as an Autism Family Navigator at the Next Step Clinic in Milwaukee, WI. providing developmental screenings, referrals, supports, and education to families, caregivers and professionals about child development and the importance of early identification. Ida was co-chair of Next Step Clinic’s Community Advisory Board and Co-chair of Milwaukee Coalition for Children’s Mental Health Community of Practice Community Health Worker Strategy. She also worked as a Family Advocate and Wellness Coach in Mental Health America of WI.’s Strong Family Healthy Home program and worked with the Autism Society of Southeastern WI. (ASSEW) as a group facilitator (Morning Coffee).

• Morgan, E.H., Rodgers, R., & Tschida, J., (2022) “Addressing the intersectionality of race and disability to improve autism care”. Pediatrics, 149 (Supplement 4). https://doi.org/10.1542/peds.2020-049437M