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AUCD - Concurrent Sessions

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Monday, November 12, 2018 2:00 PM - 3:15 PM

Session Description

Concurrent Sessions 10-18




Presenters

Limitless opportunities: Supported decision-making tools that build truly inclusive lives
Steve Ruder, BSW, Program Coordinator, Transition and Adult Projects, UC Davis at the MIND Institute, UCEDD/LEND
Catharine Mikitka, M.Ed, Sacramento, CA, United States, CA - UC Davis at the MIND Institute, UCEDD/LEND;
Robert Levy, Sacramento, CA, United States, CA - UC Davis at the MIND Institute, UCEDD/LEND;

The principles and tools used within SDM are empowering people with disabilities to live truly inclusive lives. We will have a short exploration of SDM. Small groups will explore echo mapping to create circle of supports, person centered planning, humble inquiry techniques, and empowering self advocates through creating support agreements that define areas of needed support and who they want assistance from within each role.


Parent Advocacy and Voice: When Diversity and Inclusion does not Translate into Equity and Justice
Maria Mercedes Avila, PhD, MSW, Associate Professor of Pediatrics, Vermont Leadership Education in Neurodevelopmental Disabilities, LEND
LaKesha Pettigrew, BS, Prevailing Pathway LLC, Milwaukee, WI;
Joshuaa Allison-Burbank, MA, CCC-SLP, Kansas City, KS, KS - Schiefelbusch Institute for Life Span Studies, UCEDD/LEND;
Elizabeth Holliday Morgan, Ed.M, Sacramento, CA, CA - UC Davis at the MIND Institute, UCEDD/LEND;
Maria Isabel Frangenberg, Family Voices National, Washington, DC;
Gina Carrera, Essex, VT, VT - Vermont Leadership Education in Neurodevelopmental Disabilities, LEND;
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This concurrent session will highlight stories of parents of children with special health care needs from historically underrepresented backgrounds (Native American, African American, Hispanic/Latino). The goal of the session is to share how services have impacted these families' lives and led the panelists in a journey of advocacy, education, and leadership. Stories will address the struggles of navigating complex systems while also dealing with systemic racism, prejudice and discrimination.


Longitudinal Data Projects of National Significance: What does the data tell us?
Shea Tanis, PhD, Acting Executive Director, Coleman Institute for Cognitive Disabilities
Sheryl Larson, PhD, Minneapolis, MN, United States, MN - Institute on Community Integration, UCEDD/LEND;
John Butterworth, PhD, Boston, MA, United States, MA - Institute for Community Inclusion/Boston Children's Hospital, UCEDD/LEND;

The State of the States in Intellectual and Developmental Disabilities Project, Access to Integrated Employment Project, and the Residential Information Systems Project have been collecting and analyzing national and state data for people with intellectual and developmental disabilities and their families for over 20 years. The presentation will introduce national trends in services and supports and ways in which attendees can utilize the data in research, policy and advocacy.


Developing a framework for engaging communities in training, technical assistance, research, and information dissemination
Kathy Sheppard-Jones, PhD, Executive Director, Interdisciplinary Human Development Institute, UCEDD
Erik Carter, XXXXX, Nashville, TN, TN - Vanderbilt University, UCEDD/LEND;
Carolyn Wheeler, xxxxxx, Lexington, KY, KY - Interdisciplinary Human Development Institute, UCEDD;
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This panel will discuss strategies on how University Centers for Disabilities (UCED) can intentionally engage communities in its core functions. The panel will also discuss what community engagement looks like within each core function. The panel will draw upon the experiences and share their lessons learned. The panel will present a framework to help UCEDD�s develop an intentional strategic plan for engaging communities to make them more inclusive.


Perspectives on providing Services for Undocumented Immigrant Children, Identifying Barriers and Advocating for Best Care
Julie Orlando, DPT CSCS, Physical Therapist, Children's Seashore House/ Children's Hospital of Philadelphia, LEND
Sandhyaa Iyengar, MD, Philadelphia, PA, United States, PA - Children's Seashore House/ Children's Hospital of Philadelphia, LEND;
Julieta Hernandez, PhD, LCSW, Miami, FL, United States, FL - Mailman Center for Child Development, UCEDD/LEND;
Mariela Pijem, MA, Albuquerque, NM, United States, NM - Center for Development & Disability, UCEDD/LEND;
Carlene Osweiler, MA, CCC-SLP, Philadelphia, PA, United States, PA - Children's Seashore House/ Children's Hospital of Philadelphia, LEND;
Roxanna Topete, JD, Los Angeles, CA, United States, CA - USC, Childrens Hospital, UCEDD/LEND;

Children with developmental disabilities who are undocumented immigrants often do not have access to health insurance or government-funded programs. This panel will use a case example to highlight specific health care challenges including feeding, communication, mobility, and access to follow-up care. There will be discussion about the barriers to wellness and a review of current policy initiatives to improve the quality of life of children and families.

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Promoting Employment Policy, Practice, and Outcomes: Individual UCEDD and Cross-Network Activities
Wendy Parent-Johnson, PhD, Executive Director, Sonoran UCEDD
Julie Christensen, PhD, Iowa City, IA, IA - Center for Disabilities and Development, UCEDD/LEND;
Cindy Thomas, MS, Boston, MA, MA - Institute for Community Inclusion/Boston Children's Hospital, UCEDD/LEND;
John Butterworth, PhD, Boston, MA, MA - Institute for Community Inclusion/Boston Children's Hospital, UCEDD/LEND;
Derek Nord, PhD, Bloomington, IN, IN - Indiana Institute on Disability and Community, UCEDD;
Kelly Nye-Lengeman, PhD, Minneapolis, MN, MN - Institute on Community Integration, UCEDD/LEND;
Olivia Raynor, PhD, Los Angeles, CA, Tarjan Center at UCLA;
Elise McMillan, PhD, Nashville, TN, Vanderbilt Kennedy Center for Excellence in Developmental Disabilities;
Phil Wilson, PhD, New Orleans, LA, Louisiana UCEDDERS, UCEDD/LEND;

Workplace inclusion is the next frontier of social change for people with disabilities and their allies. UCEDDs are uniquely positioned to both lead and support inclusive employment policy, services, and research in their states. Seven UCEDD's will share their employment activities and how they are working to support systems change and promote outcomes. Opportunities and strategies to start or expand employment efforts in other states will be discussed.


Using a Knowledge Translation Model in Disability Research
Ann Outlaw, MA, TA Consultant, American Institutes for Research
GeMar Neloms, , TBD, NY, United States;
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Participants will learn concepts underpinning knowledge translation (KT) to move conceptual discoveries from scientific research into practice by improving the relevance, feasibility, reporting, accessibility, interpretation, and application of research findings. Presenters will introduce the Knowledge to Action (KTA) framework and participants will practice applying this model in developing a KT project.


Project ECHO in the PacWest LENDS: Using interdisciplinary tele-mentoring to bust system barriers and reach isolated populations
Erika Ryst, M.D., Medical Director, Nevada Center for Excellence in Disabilities, UCEDD/LEND
Meghan Clark, MBA, Parent of a Child with a Disability, Anchorage, AK, United States, AK - Center for Human Development, UCEDD/LEND;
Karen Ward, EdD, Anchorage, AK, United States, AK - Center for Human Development, UCEDD/LEND;
Patrice Yasuda, PhD, Los Angeles, CA, United States, CA - USC, Childrens Hospital, UCEDD/LEND;
Douglas Vanderbilt, MD, Los Angeles, CA, United States, CA - USC, Childrens Hospital, UCEDD/LEND;
Sandy Heimerl, DPT, Albuquerque, NM, United States, NM - Center for Development & Disability, UCEDD/LEND;
Brighid Fronapfel, PhD, Reno, NV, United States, Nevada Center for Excellence in Disabilities, UCEDD/LEND;
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Project ECHO (Extending Community Healthcare Outcomes) is an innovative tele-mentoring program that develops knowledge-sharing networks led by interdisciplinary teams on specific topics. This presentation will demonstrate how four LEND programs in the PacWest have developed unique ECHO programs for special populations including Native American tribes, the military, and rural communities. The presentation will also provide tips for others who might want to develop ECHO programs in their regions.

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Enhancing Inclusion: Creating Plain Language version of the MCH Leadership Competencies to increase inclusion of LEND trainees with developmental disabilities
Karen Topper, BS, Administrative Director, Vermont Leadership Education in Neurodevelopmental Disabilities, LEND
Tia Nelis, TASH, Silver Springs, MD, United States;
Mary Alice Favro, MA, CCC-SLP, Burlington, VT, United States, VT - Vermont Leadership Education in Neurodevelopmental Disabilities, LEND;

Participants will have an opportunity to try out successful strategies that VT LEND used to make the MCH Leadership competencies cognitively accessible. Presenters will provide historical background on goal of full inclusion and rationale for having plain language version. We will share key concepts to adapt text written on a college reading level to a 6th grade reading level. Presenters will review cooperative strategies for co-developing accessible information with self-advocates

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The Evolution of Autism Support Systems for Healthcare, Education, and Families - Case Studies on Insurance and ECHO
Amy Weinstock, M. Arch, Director, Autism Insurance Resource Center, Eunice Kennedy Shriver Center, UCEDD/LEND
Eric Moody, PhD, Laramie, WY, United States, WY - Wyoming Institute for Disabilities, UCEDD;
Canyon Hardesty, Laramie, WY, United States, WY - Wyoming Institute for Disabilities, UCEDD;
Kristin Sohl, MD, FAAP, Columbia, MO, United States, MO - University of Missouri, UCEDD/LEND;
Alicia Curran, Columbia, MO, United States, MO - University of Missouri, UCEDD/LEND;
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Expanded insurance coverage for autism has been a catalyst for systemic change in the system of care, and the ECHO model is being utilized by families, educators, and physicians who support those with autism. The presentation focuses on the impact of insurance and ECHO on families affected by autism.

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Tools for Evaluating Trainee Outcomes in LEND and Developmental-Behavioral Pediatrics Programs: Findings and Lessons Learned
Andrew Roach, PhD, Associate Professor, Center for Leadership in Disability at Georgia State University, UCEDD/LEND
Lauren Bishop-Fitzpatrick, PhD, MSW, Madison, WI, United States, WI - Waisman Center, UCEDD/LEND;
Lynne Huffman, MD, Stanford University Developmental-Behavioral Pediatrics, Stanford, CA, United States;
Mark Crenshaw, MTS, Atlanta, GA, United States, GA - Center for Leadership in Disability at Georgia State University, UCEDD/LEND;
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This session describes the pioneering efforts of one developmental-behavioral pediatrics program and three LEND programs to develop instruments that sensitively measure program impact through data collection and analysis. Attendees will learn about the creation and piloting of two different surveys and leave equipped with new techniques to measure trainee outcomes.

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Disability Studies & Higher Education
Laura Eisenman, , Center for Disabilities Studies, UCEDD/LEND
STEPHEN GILSON, PhD, Orono, ME, United States, ME - The University of Maine, Center for Community Inclusion, UCEDD;
Matthew Wangeman, MCP, Flagstaff, AZ, United States, AZ - Institute for Human Development, UCEDD;
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This session presents three perspectives on disability studies in higher education. One explains why disability studies belongs in higher education. Another shares stories about belonging in college as told by students with intellectual disability. The third describes why a person with a significant disability teaches disability studies.

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