DDNJ Author Insights

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.
 
 

Ep. 8 Ida Winters and Elizabeth Morgan - Paths to Equity

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).
Elizabeth Holliday Morgan, Ph.D. is an Assistant Professor in Educational Leadership at University of California Sacramento (CSUS) and Program Coordinator for the CEDD at the MIND Institute. Her area of research focus includes Early Childhood and Early Intervention Services with a specific interest in under-represented populations. When she isn’t thinking about autism service equity, Elizabeth enjoys the theater and spending time with her family and their dog, Billie Jean.
 
To read more work written by Dr. Morgan:
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
Morgan, E.H. & Stahmer, A.C., (2021). “Narratives of single, Black mothers using cultural capital to access autism interventions in schools.” British Journal of the Sociology of Education. 42:1, 48-65. DOI: 10.1080/01425692.2020.1861927 S
She can be found in social media: Twitter: @ProfMorganPhD. IG: Transformative_Mothering. LinkedIn: linkedin.com/in/ehmorgan  Website: https://www.csus.edu/faculty/m/e.morgan/  To find out more and attend a Sankofa meeting: https://health.ucdavis.edu/mindinstitute/events/event_pdf/sankofa-2022.pdf 
 

Ep. 7 Nathan Rabang and Vanessa Hiratsuka - Disability Decolonized

In this episode, Dr. Matt Wappett interviews Nathan Rabang and Vanessa Hiratsuka about their recent article in the Developmental Disabilities network journal special issue on diversity, equity, and inclusion. Their article was entitled Disability Decolonized: Indigenous Peoples Enacting Self-determination and can be found here. A quote from their article that gets at the core of our conversation is, "To reach a full decolonization of IDD health care and fully embrace diversity, equity, and inclusion (DEI) principles, individuals in these [Indigenous] communities need to be viewed as experts in their journey of resilience." Full transcripts of this podcast interview are available in English and Spanish.
 
Nathan was born on Dena'ina land in Anchorage, AK. He is enrolled in Shxwhá:y Village in Southern BC. He currently works at the University of Alaska Anchorage where he is a researcher for the Center for Human Development and focuses in disability research, critical indigenous theory, and bioethics.
 
Vanessa Y. Hiratsuka, PhD MPH (Diné/Winnemem Wintu) is an assistant professor of clinical and translational research and co-director of research and evaluation at the University of Alaska Anchorage Center for Human Development. She is also an affiliate faculty member of the University of Washington's Department of Bioethics and Humanities. She received a bachelor’s degree in human biology from Stanford University, a master’s degree in public health practice from the University of Alaska Anchorage, and a doctoral degree in public health from Walden University. She is the co-chair of AUCD's Council on Research and Evaluation (CORE). Her community engagement work has spanned regional, national, and international efforts. Dr. Hiratsuka has extensive experience coaching and mentoring community and university-based researchers and practitioners in ethical, social, and legal implications of genomic research and clinical and translational research and developing culturally adapted chronic disease and behavioral health interventions in tribal health settings. Her research interests include ethical, social, and legal implications of genomic research and precision medicine among Indigenous populations; cultural adaptation of chronic disease and behavioral health interventions; and engaging individuals experiencing intellectual and developmental disabilities in the planning, conduct and dissemination of evaluation and research projects.
 
https://www.uaa.alaska.edu/academics/college-of-health/departments/center-for-human-development/index.cshtml
https://www.aucd.org/template/page.cfm?id=65
 

Ep.6 Jacy Farkas and Lydia Ocasio-Stoutenburg, Special Issue on Diversity, Equity, and Inclusion

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. 
https://sonoranucedd.fcm.arizona.edu
https://www.aucd.org/template/page.cfm?id=85
 
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