DDNJ Author Insights

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/