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AUCD - Concurrent Sessions

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Monday, November 6, 2017 10:15 AM - 11:30 AM


Presenters

Collaboration to Improve Policies and Practices for People with ID/ASD and Behavioral Health Needs
Joan Beasley, Ph.D., Director Center for START Services, Institute on Disability, UCEDD
Karan Burnette, MA, Fayetteville, AR, United States, AR - Partners for Inclusive Communities, UCEDD/LEND;
Tawara Goode, MA, Georgetown, DC, United States, DC - Georgetown University Center for Child & Human Development, UCEDD;
Diane Jacobstein, Ph.D., Georgetown, DC, United States, DC - Georgetown University Center for Child & Human Development, UCEDD;
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The Center for START Services, health promotion study, ARK START program, and the National Center for Cultural Competence will be presented along with strategies used to collaborate to improve the lives of people with ID/ASD and behavioral health needs.


Nutrition Is For Everyone: Successes and Lessons Learned from First Year Pilot Program
Sarah Kethley, MS, RDN, LDN, Registered Dietitian, Partners for Inclusive Communities, UCEDD/LEND
Lauren Griffiths, MPH, CHES, New Orleans, LA, United States;
Lee Wallace, EdD, RDN, LDN, Memphis, TN, United States;
Ellen Bannister, MA, Oklahoma City, OK, United States;
Linda Gonzales, OKSAN (Oklahonma Self Advocacy Network), Anadarko, OK, United States;
Tanisha Clarke, MPH, Silver Spring, MD, United States, MD - The Association of University Centers on Disabilities -;
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Nutrition Ambassadors and other Nutrition Is For Life (NIFE) participants from four states (AR, LA,OK, TN) in the pilot year of the project share their successes and lessons learned in development and implementation. Presenters describe how each state employed the Ambassador intervention model to create four distinctive work plans that recognized the unique needs, barriers, and resources of people with disabilities (PWD) in their state.


Siblings of People with Disabilities: Building Awareness and Support through LEND
Nathan Grant, President and Founder of 'Siblings with a Mission', Siblings with a Mission
Katie Arnold, MS, Sibling Leadership Network, University of Illinois at Chicago, Chicago, IL, IL - Institute on Disability & Human Development, UCEDD/LEND;
Fran Goldfarb, MA, MCHES, CPSP, Los Angeles, CA, CA - USC, Childrens Hospital, UCEDD/LEND;
Barbara Levitz, MS Ed, Valhalla, NY, NY - Westchester Institute for Human Development, UCEDD/LEND;

This panel presentation will discuss ways LEND trainees are being prepared to work with families of people with disabilities and be attune to the unique needs and perspectives of siblings. First, a new LEND curriculum specific to teaching how professionals can engage with siblings of individuals with disabilities will be presented. Second, insights and lessons learned will be shared from LEND programs that include siblings as trainees.

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Red Flags and Variants and Websites, Oh My! - Teaching Genetics Competencies to LEND Trainees
Tyler Reimschisel, MD, MHPE, LEND Director, Vanderbilt University, UCEDD/LEND
Anne Bradford Harris, PhD, MPH, RD, Madison, WI, United States, WI - Waisman Center, UCEDD/LEND;
John Moeschler, MD, Lebanon, NH, United States, NH - New Hampshire LEND Program;

This concurrent session will a) demonstrate the two genetics modules in the LEND Neurodevelopmental Disabilities Core Curriculum Resources, b) introduce the Genetics Core Competencies developed by the LEND Genetics Workgroup, and c) provide an opportunity for participants to apply the Genetics Core Competencies as a guide to modifying or enhancing the genetics education offered in their respective programs through the use of the genetics modules and other resources.

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Navigating Complexity: Perspectives on Rare and Undiagnosed Disorders
Elizabeth Lewis, PhD, Project Manager, Texas Center for Disability Studies, UCEDD
Sandy Sufian, PhD, MPH, Chicago, IL, United States, IL - Institute on Disability & Human Development, UCEDD/LEND;
Julie Orlando, PT, DPT, CSCS, Philadelphia, PA, United States, PA - Children's Hospital of Philadelphia, University of Pennsylvania - IDDRC;
Sandhyaa Iyengar, MD, FAAP, Philadelphia, PA, United States, PA - Children's Hospital of Philadelphia, University of Pennsylvania - IDDRC;
Debbie Drell, National Organization for Rare Disorders, Washington, DC, United States;

This cross-disciplinary panel examines key areas for research and advocacy within the rare and undiagnosed disability community in the United States. Presentations bring together scholarship from diverse fields, including disability studies, medicine, physical therapy, and the social sciences and humanities. This panel will highlight important areas for future research and advocacy within this disability community, and will be of interest to attendees working in both applied and scholarly fields.


"Hear" and "See" the Voice of the Deafblind
Michael Norman, Ph.D., Coordinator LA Deafblind Project, Louisiana State University Human Development Center - New Orleans, UCEDD/LEND
Julie Durando, Ed.D., Richmond, VA, United States, VA - Partnership for People with Disabilities, UCEDD/LEND;
Robin Greenfield, Ph.D., Boise, ID, United States, ID - Center on Disabilities and Human Development, UCEDD;
Molly McLaughlin, Albuquerque, NM, United States, NM - Center for Development & Disability, UCEDD/LEND;
Rose Moehring, Sioux Falls, SD, United States, SD - Center for Disabilities, UCEDD/LEND;

Individuals with deafblindness go under-identified and under referred to the nation-wide network of state deafblind projects. This program will provide an opportunity to present both successful and unsuccessful outreach efforts undertaken by five state deafblind projects in an attempt of diminish under-identification and under-referral. Panelists will present their attempts to provide a "voice" for this group of often overlooked population.


Advocacy: The Art of Networking, Coalition Building, Hearing Our Voices, and Never Giving Up
Joanne Siegel, LCSW, Associate Director, Rose F. Kennedy Center, UCEDD/LEND
Danielle Lanzetta, A.S. - Sel-Advocate, Bronx, NY, United States;
Veronica Arias, Parent, Bronx, NY, United States;
Diana Rodriguez, LMSW, Bronx, NY, United States;

Advocacy - "When the going gets tough, the tough get going." We will explore the nature of advocacy: when it is successful and when it fails. Using videos and personal anecdotes, we will cover the Willowbrook days to a period of program growth and now to what appears as a period of retrenchment. We will include efforts to achieve change from a self-advocate, parent and community organizing perspective.

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Impact of Partnering with Providers through Telehealth and Conferences to Transform Health Care for Adults with Intellectual and Developmental Disabilities
Elise McMillan, JD, Co-Director, Vanderbilt University, UCEDD/LEND
Janet Shouse, MS, Nashville, TN, United States, TN - Vanderbilt University, UCEDD/LEND;
Thomas Cheetham, MD, TN Dept of Intellectual and Developmental Disabilities, Nashville, TN, United States;
Tamar Heller, PhD, Chicago, IL, United States, IL - Institute on Disability & Human Development, UCEDD/LEND;
Maria Mello, MS, Nashville, TN, United States, TN - Vanderbilt University, UCEDD/LEND;
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Presenters from Illinois and Tennessee will share strategies and outcomes in building systems to transform health care for adults with intellectual and developmental disabilities. In Tennessee, providers took part in live videoconferences for case-based education in best practices in caring for adults with IDD. In Illinois, leaders on disability rights and disability health care from around the country gathered and through presentations and work sessions identified priorities and action plans,


From the Pillow Angel to Charlie Gard: Disability and Medical Ethics in the 21st Century
Jeffrey Brosco, MD, PhD, Professor, Clinical Pediatrics, Mailman Center for Child Development, UCEDD/LEND
Andy Imparato, JD, AUCD, Washington, DC, United States;
Stephen Sulkes, MD, Rochester, NY, United States, NY - Strong Center for Developmental Disabilities, UCEDD/LEND;
Josie Badger, PhD, J Badger Consulting Inc, Ellwood City, PA, United States;
Zipporah Levi-Shackleford, MEd, Richmond, VA, United States, VA - Partnership for People with Disabilities, UCEDD/LEND;

Is there a role for AUCD as a voice for people with disabilities confronting the health care system in extraordinary moments? Two highly publicized medical ethics cases highlight the collision between discrimination against people with disabilities and the tendency of clinicians to provide too much medical care. Panelists include a family member, a pediatrician/historian, a disability rights lawyer, and a scholar in ethics with a disability.


Ensuring Meaningful Representation and Participation
Randall Owen, PhD, , Institute on Disability & Human Development, UCEDD/LEND
Maria Mercedes Avila, PhD, Burlington, VT, United States, VT - Vermont Leadership Education in Neurodevelopmental Disabilities, LEND;
Virginie Diambou, Burlington, VT, United States, VT - Vermont Leadership Education in Neurodevelopmental Disabilities, LEND;
Bidur Dahal, Colchester, VT, United States, VT - Vermont Leadership Education in Neurodevelopmental Disabilities, LEND;
Mark Friedman, Ph.D., Beyond Tokenism Project, Alexandria, DC, United States;
Esther Doh & Pari Motia, JD, RDH, Burlington, VT, VT - Center on Disability & Community Inclusion, UCEDD;
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Creating safe, inclusive spaces is critical to ensure underserved communities meaningfully participate in development, implementation &evaluation of programs. LENDs, UCEDDs &other organizations need to create ways to hear from a wide range of stakeholders and ensure they feel safe to comment honestly on issues they see within programs. This session will describe programs that intentionally diversified the scope and breath of the participation in boards, councils, and advisory committees.


Lifting the Family Voice: Engaging families as partners in research and elevating the voice of respite needs for family caregivers
Kelly Nye-Lengerman, PhD, Research Associate, Institute on Community Integration, UCEDD/LEND
Sarah Swanson, BS Ed., Omaha, NE, United States, NE - Munroe-Meyer Institute of Genetics & Rehabilitation, UCEDD/LEND|Jolene Johnson, PhD, Omaha, NE, United States, NE - Munroe-Meyer Institute of Genetics & Rehabilitation, UCEDD/LEND;
Ellen Bennett, MS, Omaha, NE, United States, NE - Munroe-Meyer Institute of Genetics & Rehabilitation, UCEDD/LEND;
Kim Falk, BA, Omaha, NE, United States;

The voice of the family caregiver is an important one. This presentation will begin by discussing the limitations and challenges faced when researchers engage families of adults with IDD who live at home, and possible strategies to overcome those challenges. Presenters will also share a Nebraska collaboration to elevate the needs of family caregivers, evaluate Respite programs and increase the number of Respite Providers.


Inclusive Postsecondary Education: Research-to-practice, employment service settings, and disability studies
Erik Carter, Ph.D., Professor, Vanderbilt University, UCEDD/LEND
Carol Laws, PhD| MSW, Athens, GA, GA - Institute on Human Development and Disability, UCEDD|Derek Nord, PhD, Bloomington, IN, United States, IN - Indiana Institute on Disability and Community, UCEDD|,
This presentation will address three areas important to consider when creating successful transition systems. One: a compelling state-level collaboration to create a research-based and user-friendly professional development and resource portal on transition for the state of Tennessee. Two: supporting future advancement and advocacy efforts through a study utilizing National Core Indicator data to understand the connection between service settings and often-overlooked outcomes, such as relationships and self-determination, for people with intellectual and developmental disabilities across the country. Three: a post-secondary education program designed to support the full inclusion of students with intellectual and developmental disabilities on campus through the innovative intersection of service-learning in a disability studies certificate program and peer mentoring by UCEDD Trainees.

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Building Collaborations Between UCEDDs, LENDs, and the IDDRC Network
Scott Pomeroy, PhD, , Institute for Community Inclusion/Boston Children's Hospital, UCEDD/LEND
Melissa Parisi, MD, PhD, NICHD/NIH, Bethesda, MD, United States;
Olivia Raynor, PhD, Tarjan Center, Los Angeles, CA, United States;
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The 14-site network of Intellectual and Developmental Disabilities Research Centers (IDDRC) is committed to advancing science and developing interventions on behalf of people with disabilities century. This session will discuss research priorities for the IDDRCs and opportunities for greater collaboration with UCEDDs and LENDs in translating and implementing clinical and practice changes based on research findings.