DDNJ Author Insights

Ep. 20 Christine Pisani & Libby Oseguera - DD Councils in Idaho & Utah

In this episode, Matt interviews two more directors of Developmental Disabilities Councils, in our series about DD Act programs. Our guests are, Christine Pisani, who is Executive Director of the Idaho Council on Developmental Disabilities [https://icdd.idaho.gov/], and Libby Oseguera, the Executive Director of the Utah Developmental Disabilities Council [https://uddc.utah.gov/]. They talk to us about their backgrounds, how they ended up in their roles, what they do as DD Councils in their states, and how they see DD Councils improving the lives of people with disabilities. Full transcripts of this episode are available in English [https://idrpp.usu.edu/research/episode-transcripts/episode-20-english.pdf]and in Spanish [https://idrpp.usu.edu/research/episode-transcripts/episode-20-christine-libby-spanish.pdf].   You can read more about the programs within the DD network in our new issue of the Developmental Disabilities Network Journal -  [https://digitalcommons.usu.edu/ddnj/vol5/iss2/]new articles are still being published in this issue, so keep checking back!   About our guests:   Christine Pisani has multiple family members with disabilities and began working for people with disabilities as a college student at the University of Idaho in 1986. She has worked in many direct support roles supporting people with intellectual and developmental disabilities, people with mental health issues, and people with dementia. She is a caregiver to her mother who has dementia. Christine started at the Idaho Council on Developmental Disabilities [https://icdd.idaho.gov/] in 1996 as the Council planner, then served as a program specialist. She has served as the Executive Director since 2013. Her work at the Council presents opportunities to work directly with people with intellectual and developmental disabilities, family members, and policymakers statewide. Her work includes leadership development, service system redesign, voting rights, advocacy and education, and federal and state legislative policy. Christine holds a Master of Education degree in Special Education with an emphasis in public policy. She is also a graduate of the State of Idaho’s Certified Public Management program. In her spare time, she enjoys spending time with her two adult daughters, her Golden Retriever Hazel, gardening, and backpacking.   Libby Oseguera has nearly thirty years of dedicated public service, encompassing adaptive recreation, job coaching, and extensive advocacy programming, policy development, and active engagement in systemic changes for individuals with intellectual and developmental disabilities. She earned a Bachelor of Science in Recreation from the University of Nevada, Las Vegas, followed by a Master of Public Administration from California State University, Dominguez Hills. Currently, she serves as the Executive Director of the Utah Developmental Disabilities Council, [https://uddc.utah.gov/] where she is committed to supporting and empowering people with intellectual and developmental disabilities to lead inclusive, meaningful, and self-determined lives within their communities.

Ep. 19 Talley Wells - Disability Network Highlight: Disability Councils

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 [https://idrpp.usu.edu/research/episode-transcripts/ep-19-wells-transcript-english.pdf]and Spanish [https://idrpp.usu.edu/research/episode-transcripts/ep-19-wells-spanish.pdf]. * NCCDD: https://nccdd.org/ [https://nccdd.org/] * OlmsteadRights.org: https://www.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.

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

In this special episode, Matt [https://idrpp.usu.edu/]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 [https://idrpp.usu.edu/research/english-transcript-episode-18.pdf]or Spanish [https://idrpp.usu.edu/research/spanish-episode-18.pdf].   "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 [https://www.aucd.org/directory-center-list?type=UCEDD]   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) [https://www.iidc.indiana.edu/], 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 a [https://www.unr.edu/nced/]t 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 [https://digitalcommons.usu.edu/ddnj/vol4/iss2/9/]" published in the Fall 2024 issue of the Developmental Disabilities Network Journal. Full transcripts of this episode are available here in English [https://idrpp.usu.edu/research/episode-17-english.pdf]and in Spanish [https://idrpp.usu.edu/research/episode-17-spanish.pdf]. 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 [https://med.miami.edu/centers-and-institutes/mailman-center/education/leadership-training-opportunities]: 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 [https://digitalcommons.usu.edu/ddnj/vol4/iss2/3/]" 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 [https://idrpp.usu.edu/research/ep-16-english.pdf]and Spanish [https://idrpp.usu.edu/about/ddnj/ep-16-spanish.pdf]. 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 [https://edpuzzle.com/playlist/6671a885fa8501f2611df63c]