DDNJ Author Insights

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

For this episode of the Developmental Disabilities Network Journal (DDNJ) Author Insights podcast, we are bringing our listeners something a little different. We've had the immense privilege to have Jacy Farkas and Dr. Lydia Ocasio-Stoutenburg work with us as guest editors on the upcoming special issue of the DDNJ, focused on diversity, equity, and inclusion. Be sure to watch for the publication of this issue soon, and take a listen to this episode to learn about how Lydia and Jacy became involved in the disability field and how they bring their values into their work.

Full transcripts are available in English and in Spanish on our website at https://idrpp.usu.edu/about/developmental-disabilities-network-journal

Visit the journal website at https://digitalcommons.usu.edu/ddnj/ 

Guest Bios:

Jacy Farkas is the Assistant Director of the Sonoran Center for Excellence in Disabilities at the University of Arizona in Tucson, where she helps oversee multiple efforts related to person-centered practices, transition, and information dissemination. Jacy has been a long-time leader within the AUCD Multicultural Council and has a reputation as an incredible collaborator and advocate. She also serves as a leadership institute mentor for the National Center for Cultural Competence at Georgetown University, and she has contributed to multiple projects and publications related to diversity, equity, and inclusion within the disability world. Jacy is currently in the process of completing her doctoral degree in Family Studies and Human Development at the University of Arizona and she also holds a Master's in Information Resources and Library Science and a bachelor's in Classical Studies. 

Dr. Lydia Ocasio Stoutenberg has a long history in the DD network, and she's worked with DD Councils, with Parent-to-Parent health information Centers, and UCEDDs. She has also served in the leadership of AUCD's Multicultural Council with Jacy, and she was formerly a program manager for the Step-Up Assistive Technology Program at the University of Miami UCEDD. She is a qualitative researcher, she's a parent of a child with a disability, and she is a community advocate for children with disabilities and their families. She received her PhD in Special Education from the University of Miami and holds master's degrees in both biology and bioethics.

Books:

https://www.vitalsource.com/products/meeting-families-where-they-are-building-equity-beth-harry-lydia-v9780807778548

https://www.tcpress.com/case-studies-in-building-equity-through-family-advocacy-in-special-education-9780807765340

In this episode, we talked to Tabitha and Bob about their recent article in DDNJ titled, " Collaboration between Secondary Special Education Teachers and Community Rehabilitation Service Providers: A Focus Group Analysis" - a full transcript of this podcast is available in English and in Spanish.

Bob Morgan is a Professor in the Department of Special Education and Rehabilitation at Utah State University. He is the Head of the Masters Program Committee and the Severe Disabilities Licensure Program. Bob worked in classrooms for elementary and secondary-aged students as a School Psychologist and Behavior Specialist for 12 years. His research focuses on transition of students with disabilities from school to adult services. He has authored three books, six book chapters, and nearly 100 peer-reviewed journal articles. He has served as Principal Investigator for 41 grants totaling over $12 million dollars. Bob is Principal Investigator of the Doctoral Leadership Program in Interdisciplinary Transition at Utah State University. He is consulting editor and reviewer for several refereed journals including Career Development and Transition for Exceptional Individuals, Journal of Vocational Rehabilitation, and Teaching Exceptional Children.

In this episode we interviewed Dr. Parthenia "Parthy" Dinora and Molly Dellinger-Wray to learn about the Leadership for Empowerment and Abuse Prevention (LEAP) program which is an abuse prevention intervention for people with intellectual disabilities. Parthy and Molly were co-authors on an article about this program and you can find the article about this program in the most recent issue of the Development Disabilities Network Journal here. We wanted to ask them about some of the key take-aways of their research, why such a program is necessary, and some of the stories behind the scenes of the research process. Full transcripts of this episode are available in English or Spanish.

Please be aware that we address sensitive topics in this episode including abuse and sexual assault. If you suspect such abuse or you or someone you know have been the victim of abuse, please visit this website to find the appropriate resources or to speak with someone who is trained to help, call the National Sexual Assault Hotline at 800-656-HOPE (4673) or chat online at online.rainn.org.

Links mentioned by our guests:

https://leap.partnership.vcu.edu/

Guest Bios:

Dr. Parthenia “Parthy” Dinora has been employed in the disability field for over 24 years, in her earlier years administering direct service projects focused on community participation for people with IDD, and over 20 years conducting research and evaluation studies on disability supports and services. She is the executive director of Virginia’s University Center for Excellence in Intellectual and Developmental Disabilities at Virginia Commonwealth University which operates 40 projects that support people with IDD and their families in living full lives in community. She has served as Principal Investigator (PI) on multiple federal research grants examining outcomes of people with IDD and intervention-based studies examining the health and well-being of people with IDD. In all of these projects, people with disabilities and families provide strategic direction and serve in leadership roles. Also, as the parent of a child with a developmental disability, she is fully committed to shared leadership and alliance with people with disabilities and families.

Molly Dellinger-Wray, is a project manager at the Partnership for People with Disabilities, a university center for excellence in developmental disabilities. Molly is a special educator and a parent who has sat on both sides of the IEP table and has more than 30 years experience supporting children and adults with disabilities in schools, homes and community settings. Molly Is an endorsed Positive Behavior Support Facilitator and a certified instructor in Person Centered Thinking and Stewards of Children. Molly’s professional goal is to help improve the quality of life for everyone through developing healthy relationships.

This episode is an interview with Dr. Samantha Ross and her coauthor, Bridgette Schram, about their article entitled "Promoting Inclusion of Adults with Disabilities in Local Fitness Programs: A Needs Assessment." This article can be found in the most recent issue of DDNJ, Volume Two, Issue One. So, by way of introduction, Dr. Samantha Ross is an assistant professor in the Physical Education Teacher Education program within the College of Physical Activity and Sports Sciences at West Virginia University. Dr. Ross completed her doctoral training at Oregon State University, where she also received a Master of Public Health and Epidemiology. At Oregon State University, she served as coordinator for a peer mentor program partnering undergraduate students with adults with disabilities for weekly community-based physical activity. At WVU, she has partnered with the Center for Excellence in Disabilities to develop a peer-mentor Physical Activity and Health Program for post-secondary students with intellectual disabilities. Her goal as a researcher and an educator is to enhance the participation and opportunities of individuals with disabilities within physical activity and sport programs.  I'm also joined today by Bridget Schramm. Bridget is a doctoral student in Public Health at Georgia State University, and she is also a graduate research assistant at the UCEDD at Georgia State, the Center for Leadership in disability. Bridget was a lead trainee in the 2020/2021 cohort and is active in the American Public Health Association Disability Section where she served as the student liaison. Bridget's research explores health disparities faced by people with disabilities, particularly examining how society constructs disabling environments that may prevent access and participation in the social determinants of health. Bridgette is also interested in the development and evaluation of community-based programs that support inclusive participation. She often applies these ideas and concepts to physical activity environments, which is supported by her master's in Kinesiology and her experience teaching and coaching individuals of all abilities.

Transcripts in English and Spanish are available here.

Links mentioned in this episode: