DDNJ Author Insights

Ep. 18 Derek Nord and Randall Owen - University Centers for Excellence in Developmental Disabilities

In this special episode, Matt interviews Derek Nord and Randall Owen about something they all have in common - their jobs as Directors of University Centers on Excellence in Developmental Disabilities (UCEDDs). They discuss how they ended up working within this system, the valuable services and research they and their centers provide to their communities, and what is unique about the UCEDD system. DDNJ was created to highlight the work done in UCEDDs and other disability network programs. View the full transcript in English or Spanish.
 
"There are 68 UCEDDs-at least one in every US state and territory-that facilitate the flow of disability-related information between community and university. UCEDDs work with people with disabilities, members of their families, state and local government agencies, and community providers in projects that provide training, technical assistance, service, research, and information sharing, with a focus on building the capacity of communities to sustain all their residents." -AUCD
 
Dr. Derek Nord is a nationally recognized scholar and leader in disability research, public policy, and systems change. He serves as Director of the Indiana Institute on Disability and Community (IIDC), Indiana’s federally designated University Center for Excellence in Developmental Disabilities and is a professor in the IU School of Education. His work focuses on improving how systems support the full inclusion and participation of people with disabilities in all areas of life, including education, employment, health, and community living. With a focus on applied research and partnership, Dr. Nord leads efforts that inform policy, strengthen practice, and remove barriers across state and national service systems. Dr. Nord’s research explores how disability policy, service systems, and community practices interact to shape real-world outcomes. His work has directly informed policy discussions at the state, federal, and international levels, including in reports to the U.S. Congress and President, briefings with lawmakers, Medicaid redesign efforts, and global initiatives led by UNESCO. He is also known for his data-driven work on employment, inclusion, guardianship reform, and long-term services and supports. Under Dr. Nord’s direction, the IIDC works in close collaboration with state agencies, educators, researchers, advocates, and people with disabilities to advance its mission: ensuring that individuals of all ages and abilities are fully included in community life. He oversees a multidisciplinary team of experts who lead nationally recognized work across a broad range of issues, from early childhood and education to employment, health equity, and systems innovation. Through research, training, and technical assistance, the IIDC supports meaningful change in policy and practice throughout Indiana and beyond.
 
Randall Owen, PhD, is the Director of the Nevada Center for Excellence in Disabilities at the University of Nevada, Reno. Randall is an Associate Professor of Special Education and Disability Studies in the College of Education and Human Development. He has served in these roles for almost 5 years. Randall’s scholarly interests are in inclusion practices for people with disabilities, including regarding students with disabilities in STEM, education in general, healthcare services and policies, the role of family, and the employment of people with disabilities. Randall’s work seeks to amplify the voices of people with disabilities and ensure that they are directly included in decisions that impact them. He teaches courses in Disability Studies to graduate students about the lived experiences of people with disabilities. He also teaches a course on grant writing. Randall is a product of the UCEDD network. He completed his graduate training at the Institute on Disability and Human Development (Illinois’ UCEDD) at the University of Illinois at Chicago. He earned a Masters degree in Disability and Human Development (2007) and PhD in Disability Studies (2011). After completing the PhD, Randall stayed with IDHD as a postdoctoral research associate, clinical faculty, and eventually the Associate Director. With the exception of one year away (2019-2020), Randall has been employed in the AUCD network since 2005. He is also part of UNR’s LEND faculty.

Ep. 17 Disability Education in Medical Schools

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.
Dr. Hannah Ship is an Internal Medicine Resident Physician at UCLA, with a dual degree (M.D./M.P.H.) from the University of Miami Miller School of Medicine. Passionate about health equity, she advocates for the Deaf and hard-of-hearing communities and designed a medical curriculum on language, disability, and healthcare access. Recognized as an Emerging Leader by the AUCD, Dr. Ship strives to advance health equity and language justice in healthcare with disability culture at the forefront.
 
Dr. Sahana Shankar is a second-year Medicine-Pediatrics resident at UCLA, with a strong commitment to serving patients with intellectual and developmental disabilities (IDD). She completed her undergraduate and medical school studies at the University of Miami and is dedicated to pursuing a clinical career focused on providing primary care to individuals with IDD across the lifespan. Beyond clinical practice, Dr. Shankar is passionate about educating medical professionals on how to deliver optimal care for this patient population. Her advocacy and leadership in this area were recognized by the Association of University Centers on Disabilities (AUCD), which honored her as an Emerging Leader.
 
Shelly Baer is a licensed clinical social worker who is employed at the University of Miami Miller School of Medicine’s Mailman Center for Child Development as the Director of Leadership Training Initiatives. She coordinates the center’s pipeline leadership programs: the Emerging Transformational Leadership Program (ETLP), Project Self-Advocate Leadership Training (SALT), and Student Emerging Leaders Program (SELP). She assists in managing aspects of LEND and shares her story with the LEND trainees and medical students. Ms. Baer was diagnosed with juvenile rheumatoid arthritis at age three, but it has never slowed her down. She pushes boundaries and doesn’t let her disability hold her back.

Ep. 16 - Megan Best, Amanda Johnston, Sarah Demissie - Civic Engagement and Youth with Disabilities

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:
https://edpuzzle.com/playlist/6671a885fa8501f2611df63c 
 

Ep. 15 Barriers to Health Care Among Adults with Disabilities with Mary Beth Bruder and Tara Lutz

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. 
Mary Beth Bruder, Ph.D. is a Professor in the University of Connecticut’s School of Medicine and Neag School of Education. She began her career as an early childhood special education public school teacher in 1976, where she also provided consultation to inclusive childcare and Head Start Programs. She received her Ph.D. from the University of Oregon in Early Childhood Intervention/Developmental Disabilities in 1983. Since that time, Dr. Bruder has been project director/PI on over 100 competitively awarded grant funded demonstration, training, outreach, research, and technical assistance projects and centers focused on interdisciplinary early childhood intervention, and special education. She currently directs the University of Connecticut Center for Excellence in Developmental Disabilities Education, Research, and Service, the Leadership Education in Neurodevelopmental and Other Disabilities Program and the National Early Childhood Intervention Personnel Center for Equity. Dr. Bruder is the editor of Infants and Young Children: An Interdisciplinary Journal in Early Childhood Intervention, and chairs the International Society of Early Childhood Intervention. She was the recipient of the 2024 Lifetime Achievement Award from the Council for Exceptional Children.
 
Tara Lutz is the Associate Director for Training at the University of Connecticut Center for Excellence in Developmental Disabilities Education, Research and Service (UConn UCEDD) and an Assistant Professor of Public Health Sciences at UConn School of Medicine. She coordinates and teaches the Certificate of Interdisciplinary Disability Studies in Public Health. Tara received her PhD in public health and MPH from the University of Connecticut. She earned her bachelor's degree in biology from the College of the Holy Cross. She is also a Master Certified Health Education Specialist (MCHES®). Tara is a family member of persons with disabilities.

Ep. 14 Addressing Ableism in Mental Healthcare for Patients with IDD - Micah Peace Urquilla

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.
Micah Peace Urquilla is an Autistic, multiply Disabled educator, community organizer, and researcher from Louisville, KY. They work as a Research & Training Associate at the National Center for START Services, where they serve as a Co-Investigator on the PCORI-funded study, "Evaluation of Telehealth Services on Mental Health Outcomes for People with Intellectual Disabilities," of which the PEIS is a product. Grounded in an interdisciplinary approach as well as their own personal experiences of Disability, Micah strives to foster collaboration between Disability service providers and the Disability Community to promote true access, inclusion, and empowerment through creativity, radical acceptance, and collaboration. Micah's professional interests include participatory research; peer mentoring and other forms of popular education; and the intersections between I/DD, systemic experiences of oppression or marginalization, and trauma. In their free time, Micah enjoys spending time outdoors, game nights, and napping with their cat, Sophie.
 
https://iod.unh.edu/evaluation-telehealth-services-mental-health-outcomes-people-intellectual-disabilities 

Ep. 13 Joan Beasley and Luke Kalb - MHIDD Special Issue

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.
Joan B. Beasley received her PhD from the Heller School in Social Policy at Brandeis University. She has worked to improve mental health services for people with IDD for over 40 years. Joni is the author of START, an evidence based and evidence informed crisis prevention and Intervention program implemented across the U.S. Dr. Beasley believes that research, especially inclusive research is key to move the field forward. She is currently the Principal Investigator and co-Investigator on several research inclusive research projects, including a federally funded 5 year Comparative Effectiveness Research study to compare Telehealth with in person services for people with MH-IDD. Her most recent efforts have focused on the development and use of Patient Reported Experience Measures for people with IDD regarding their mental health service experiences.
 
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

Ep. 12 - Reimagining Disability, a Call to Action - with Julia Pappageorge & Paritosh Joshi

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.
 
Paritosh Joshi is a graduate student in Clinical Psychology at Teachers College, Columbia University. His background includes a Master of Arts in sociology and research experience in public health, and he hopes to understand health issues from an interdisciplinary and intersectional perspective. Paritosh is passionate about reducing mental health disparities and promoting health equity. In turn, he hopes to engage an activist approach to his research.
 

Ep. 11 Richard Chapman and Jessica Schuttler - Self-Determination and Mental Health

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.
Jessica Schuttler is a child psychologist and assistant professor at the University of Kansas Medical Center in the Division of Developmental-Behavioral Pediatrics. She is also the Training Director for the Kansas Leadership Education in Neurodevelopmental Disabilities (LEND) program. She works with children, youth and young adults to provide therapy and interdisciplinary developmental evaluations. 
 
 

Ep. 10 Shari Cooper - Loving My Skin: A Self-Advocate’s Perspective from Dayton, Ohio

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.
 
 

Ep. 9 Tawara Goode: Advancing Diversity, Equity, and Inclusion

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 MedicalCenter in Washington, D.C. She has been on the faculty of the Georgetown University Center for Child andHuman Development (GUCCHD), for over 30 years and has served in many capacities. She has degrees inearly childhood education and education and human development. Professor Goode has extensive experience as a principal investigator for federal and private sector grants and contracts. A primary area of focus for Professor Goode is national level efforts to advance and sustain cultural and linguistic competence within an array of settings including but not limited to institutions of higher education, health, mental health, and other human service systems. Professor Goode is the director of the Georgetown University National Center for Cultural Competence (NCCC). The NCCC was established in 1995 and Professor Goode has served as director for 27 years. The mission of the NCCC is to increase the capacity of health care and mental health care programs to design, implement, and evaluate culturally and linguistically competent service delivery systems to address growing diversity, persistent disparities, and to promote health and mental health equity. Professor Goode is acknowledged as a thought leader in the area of cultural and linguistic competence and for building the NCCC into a nationally and internationallyrecognized and award winning program. She had a primary role in developing curricula, assessmentinstruments, professional development series, and other resources that support cultural and linguisticcompetence.