DDNJ Author Insights

In another special episode about the Developmental Disabilities Network, Matt interviews Talley Wells about his experience with a state disability council. Along with UCEDDs, and Protection & Advocacy agencies, each state has a disability council. Talley shares his impressive history in the disability field and how the North Carolina Council on Developmental Disabilities (NCCDD) supports people with disabilities across the state. A full transcript is available in English and Spanish. NCCDD: https://nccdd.org/ OlmsteadRights.org: https://www.olmsteadrights.org/ Bio: Talley Wells is the Executive Director of the North Carolina Council on Developmental Disabilities (NCCDD). NCCDD is a forty-person Council appointed by North Carolina's Governor and includes people with intellectual and other developmental disabilities (I/DD), family members, state agency leaders, and three legislators. NCCDD advocates for improved systems and supports for people with I/DD. Talley previously was the Director of the Disability Integration Project at the Atlanta Legal Aid Society. Talley founded the Olmstead Disability Rights Law Clinic at Georgia State School of Law. He also founded OlmsteadRights.org. He is a former skipper on the world-famous Jungle Cruise at Walt Disney World.

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.

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.

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

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.

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.

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

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. Tabitha Pacheco is a veteran educator with classroom experience in public, charter, and digital education settings as a Teacher, Instructional Coach, Mentor, Special Education Director, and Educational Consultant. In addition to her classroom experience, Tabitha has serves on several boards and is Director of the Utah Teachers Fellows program, working with educators across the state to develop their leadership and policy expertise. Currently, she works with the Utah State Board of Education as the Special Education Mentor Specialist. In 2013, she was awarded the Utah State Office of Education “Significant Disabilities Teacher of the Year” for outstanding leadership and commitment to students with disabilities. Tabitha earned her M.Ed in Special Education from Utah State University and is a National Board Certified Teacher in Exceptional Needs.

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.

Welcome to the inaugural episode of the DDNJ Author insights podcast. We are excited to welcome you to this new series of interviews with authors published in the Developmental Disabilities Network Journal, adding another level of accessibility and insight to the world of disability research. In this episode, Dr. Matthew Wappett, Editor in Chief of the DDNJ and Executive Director of the Institute for Disability Research, Practice, and Policy at Utah State University, interviews Drs. Church and McGinley about their recently published article "Advance Care Planning Within Individualized Care Plans: A Component of Emergency Preparedness" - check out their full article here. We learn about what motivated them to do this research, the take home message, inspiring stories, and some personal information to make the names of authors' on a pdf into real people doing impactful work. We hope you enjoy this episode. Full transcripts available in English or in Spanish. Bios: Heather has a PhD in health & rehabilitation sciences, specializing in health policy, health equity, developmental disabilities and mental health. She has enjoyed working with people who have developmental disabilities for 20 years. In this time, she has been inspired by the commitment to removing barriers to inclusion and full participation in society demonstrated by people with developmental disabilities, their loved ones and those who serve them. www.heatherchurchrp.com Jackie McGinley is a licensed social worker and Assistant Professor in the Department of Social Work. She earned her MSW from the Rutgers University, School of Social Work and her PhD from the University at Buffalo, School of Social Work. She also completed a year-long fellowship with the University of Rochester, receiving advanced research and clinical training from the Leadership Education in Neurodevelopmental Disabilities (LEND) program. Her mission as a social work scholar is to lead translational research that improves care for people with disabilities as they age, experience serious illness, and reach life’s end. Resources mentioned in this episode: The ARC Center for Future Planning: https://futureplanning.thearc.org/ Breaking Bad News Website, from Professor Irene Tuffrey-Wijne & colleagues in the United Kingdom: http://www.breakingbadnews.org/ Talking End of Life (TEL) Website, from Professor Michele Wiese & colleagues in Australia: https://www.caresearch.com.au/tel/tabid/4881/Default.aspx The Conversation Project: https://theconversationproject.org/nhdd/advance-care-planning/ Five Wishes: https://fivewishes.org/