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AUCD - Concurrent Sessions

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Tuesday, November 11, 2014 10:30 AM - 11:45 AM

Location: Meeting Room Level


Presenters

The New Mexico Disability Story
Lisa Rossignol, MA Communication, Healthcare Liaison, Center for Development & Disability, UCEDD/LEND
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This presentation will explore the experience of a small group of researchers and advocates in the development of a multimedia project to document the disability history of New Mexico from 1940-present.


Healthy Weight Research Network for Children with ASD/DD: Where We Are and Where We Need to Go
Carol Curtin, MSW, Director, UCEDD & LEND Programs, Eunice Kennedy Shriver Center, UCEDD/LEND
Linda Bandini, PhD, Boston, MA, United States, MA - Eunice Kennedy Shriver Center, UCEDD/LEND;
Aviva Must, PhD, Tufts University School of Medicine, Boston, MA, United States;

This panel will present the epidemiology of obesity in children with ASD and DD and the issues and challenges in developing interventions to prevent and treat obesity in these populations. We will also introduce the Healthy Weight Research Network for Children with ASD/DD, an interdisciplinary collaboration of researchers and advisors tasked with setting and implementing a research agenda to address the problem of obesity in children with ASD/DD.


Transition Discoveries: Empowered Voices Expressing Authentic Dreams and Goals
Celia Feinstein, Executive Director, Institute on Disabilities, UCEDD
Joan Kester, PhD, George Washington University, Washington DC, DC, United States;
Sally Gould-Taylor, Temple University Institute on Disabilities, Philadelphia, PA, United States, PA - Institute on Disabilities, UCEDD;
Ali Harsok, PA Youth Leadership Network, Lehigh Valley, PA, United States;
Everett Deibler, PA Youth Leadership Network, Lehigh Valley, PA, United States;

Join this panel to hear about our ongoing research project aimed at discovering the authentic lives of transitioning youth and their families. As part of the PA Developmental Disabilities Council-funded project, hear various stakeholders discuss the realities of how this newly gleaned qualitative data will support genuine engagement for transition planning and beyond. Panel includes research investigators, youth network leaders, and transitioning youth and their family.


Sustainable Person Directed Service Models in Today's Political, Economic and Social Systems: Exploring Provider Practices, Outcomes and National Trends
Caitlin Bailey, PhD ABD, Director of Research and Evaluation, National Leadership Consortium on Developmental Disabilities
Julie Bershadsky, PhD, Human Services Research Institute, Cambridge, MA, United States;
Marian Saulino, MS, Values Into Action, Media, PA, United States;
Gail Godwin, MS, Shared Support Maryland, Inc., Baltimore, MD, United States;
Nancy Weiss, MS, National Leadership Consortium on Developmental Disabilities at the University of Delaware, Newark, DE, United States;

This collaborative effort between two organizations providing entirely person directed services and researchers from the National Leadership Consortium and the Human Services Research Institute will explore how these organizations successfully provide individualized services in current political and economic systems, barriers they face and how their experiences and outcomes relate to national level research on current trends, outcomes for people using supports and obstacles identified by leaders across the disabilities field.


Supported Decisionmaking as an Alternative to Guardianship: How Do We Make It Happen?
Samantha Crane, J.D., Director of Public Policy, Autistic Self Advocacy Network
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Supported decisionmaking, through which people with disabilities make their own choices in consultation with trusted individuals, is a promising alternative to guardianship. In practice, however, courts have continued to grant guardianships to "protect" individuals with disabilities who could be using supported decisionmaking. This discussion will provide an overview of the reasons why courts continue to grant guardianships and the policy reforms that could increase usage of supported decisionmaking models.


Community Response to Individuals with IDD Who Are Experiencing Behavioral Crisis
Amie Lulinski, PhD, Director for Disability Rights Policy, Arc of the United States (as of July 1)
Richard Kiefer-O'Donnell, PhD, Anchorage, AK, United States, AK - Center for Human Development, UCEDD/LEND;
Stacey Ramirez, Atlanta, GA, United States, GA - Center for Leadership in Disability at Georgia State University, UCEDD/LEND;
Glenn T. Fujiura, PhD, Chicago, IL, United States, IL - Institute on Disability & Human Development, UCEDD/LEND;
Kim Bullock, MD, FAAFP, Georgetown Medical Center & Providence Hospital, Washington, DC, United States;

Results from a recent study examining community capacity to provide mental/behavioral health intervention to people with IDD highlighted the need for crisis response and a reliance of community-based residential service providers on first responders in situations involving a person with IDD who is experiencing a behavioral crisis. In addition, two models, a police training program in Georgia and a behavioral crisis intervention model from Alaska, will be discussed.

Read and download presentation materials >


The Use of Social Media to Promote the Ratification of the Convention on the Rights of Persons with Disabilities
Patricia Morrissey, PhD, Boardmember, USICD, USICD
Isabel Hodge, AS, Parent Advocate, Stafford, VA, United States;
Eileen Dombrowski, M Ed, USICD, Washington, DC, United States;
Andrea Shettle, MSW, MA, USICD, Washington, DC, United States;

We share our collective experiences on the use of social media to promote the ratification of the Convention the Rights of Persons with Disabilities. We explain how to set up a Facebook page and a blog. We share many statistics. We describe what worked and what didn't work in terms of attracting an audience. What we share will have broad application for anyone advocating for something through social media.


Achieving Change Together: Funding the Future of Disability and Employment
James Emmett, Vice Presidient, The Workplace Initiative , The Poses Family Foundation
Ilene Lainer, Autism Speaks/New York Collaborates for Autism - Night of Too Many Stars, New York, NY, United States;
Elaine Katz, Kessler Foundation, West Orange, NJ, United States;
Kristine Foss, Ability Beyond, Bethel, CT, United States;

This session presents the collaborative approach of four national funders to support groundbreaking work in disability and inclusion. The funders joined forces with leaders across sectors to pursue a new strategy that has potential to transform the field. The session will highlight the collaborative's evolution, impact goals, early success indicators, and best practices underway in one of the nation's premier brands supported by this collaborative: PepsiCo's Achieving Change Together initiative.


Engaging Partners to Diagnose Fetal Alcohol Spectrum Disorders: A Look at Surveillance, Screening, and Diagnosis.
David Deere, MSW, MTh, Director, Partners for Inclusive Communities, UCEDD/LEND
Susan Astley, PhD, Seattle, WA, WA - Center on Human Development & Disability, UCEDD/LEND;
Maureen Kelly, MS, RN, Tucson, AZ, AZ - The University of Arizona, LEND;
Mary O'Connor, PhD, Los Angeles, CA, CA - Tarjan Center UCLA, UCEDD;
Piyadasa Kodituwakku, PhD, Albuquerque, NM, NM - Center for Development & Disability, UCEDD/LEND;

Fetal alcohol spectrum disorders (FASD) are the cause of the largest number of preventable cases of intellectual disabilities, affecting 20-50 per 1,000 births. Participants in this presentation will learn the effects of FASD and how to engage their communities to better screen for and diagnose FASD. Presenters from four UCEDDs will describe their protocols and explain the new DSM diagnosis of Neurobehavioral Disorder associated with Prenatal Alcohol Exposure (ND-PAE).


Approaches to Legislative and Policy Training
Katie Arnold, MS, Director of Community Education, Institute on Disability & Human Development, UCEDD/LEND
Dorigen Keeney, MS RD, Johnson, VT, VT - Interdisciplinary Leadership Education Program for Health Professionals, LEND;

This session combines the topics of "Siblings of People with Disabilities: An Untapped Constituency for Policy Advocacy" and "Making Policy Transparent: One LEND Program's Approach to Legislative/Policy Training."

Read and download presentation materials >


The Importance, Impact, and Implications of Family Discipline in Training
Fran Goldfarb, MA, Director, Family Support, USC, Childrens Hospital, UCEDD/LEND
Barbara Levitz, MS Ed, Vahalla, NY, NY - Westchester Institute for Human Development, UCEDD/LEND;
Sheryl Feuer, Cincinnati, OH, OH - University of Cincinnati UCE, UCEDD/LEND;
Mark Smith, MS, Omaha, NE, NE - Munroe-Meyer Institute of Genetics & Rehabilitation, UCEDD/LEND;
Shelley Barnes, Portland, OR, OR - Oregon Institute on Development & Disability, UCEDD/LEND;

This session features presentations on "LEND Family Discipline Trainees: Where do they go from here?" and "Family Involvement: Its Importance, Impact and Implications for LEND and other Training Programs."