DDNJ Author Insights

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 qupte 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
 

Ep. 5 Tabitha Pacheco and Bob Morgan ” Collaboration between Secondary Special Education Teachers and Community Rehabilitation Service Providers: A Focus Group Analysis”

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.

Ep. 4 Dr. Sarah Behrens Family Perspectives on Developmental Monitoring

We interviewed Dr. Sarah Behrens about her recent article in the DDNJ Family Perspectives on Developmental Monitoring: A Qualitative Study Dr. Behrens is a recent University of Kansas Medical Center graduate in Therapeutic Science with a research emphasis on early identification practices for young children and their families. She has a master's in social work and is a former LEND trainee. Serving families and children with autism spectrum disorder, Sarah was the project coordinator for the autism diagnostic initiative with the Kansas State Department of Education TASN project and KU Medical Center's diagnostic clinic for 10 years. Currently, Sarah is a coach on the PRISM project at KU's Juniper Gardens Children's Project. She enjoys spending time with her two daughters and husband, traveling, and listening to podcasts! Transcripts for this interview are available in English and Spanish. 
 
Links mentioned in this episode include:
https://www.cdc.gov/ncbddd/actearly/index.html
https://prism.ku.edu/
https://juniper.ku.edu/
https://kucdd.ku.edu/
 
To find out more about this podcast please visit https://idrpp.usu.edu/about/developmental-disabilities-network-journal 
 
To find out more about the DDNJ, please visit https://digitalcommons.usu.edu/ddnj/ 
 
 

Ep. 3 Dr. Parthenia Dinora and Molly Dellinger-Wray, The Leadership for Empowerment and Abuse Prevention (LEAP) Program

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.

Ep. 2 Dr. Samantha Ross and Bridgette Schram ”Promoting Inclusion of Adults with Disabilities in Local Fitness Programs: A Needs Assessment”

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:
https://www.nchpad.org/1189/6024/Guidelines~for~Disability~Inclusion~in~Programs~and~Policies
https://www.activityalliance.org.uk/assets/000/000/414/IFI_marketing_kitbag_original.pdf?1463143687
https://www.nchpad.org/426/2254/AIMFREE~Manuals
https://www.acsm.org/get-stay-certified/get-certified/specialization/cift
http://committoinclusion.org/
 

Episode 1 Interview with Dr. Heather Church and Dr. Jackie McGinley

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/