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AUCD - Poster Symposium 4B: Self-determination, Ethics, and Emergency Preparedness

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Tuesday, November 19, 2019 10:30 AM - 11:45 AM

Location: Congressional B

Session Description

All posters for the AUCD Conference will be presented throughout Monday and Tuesday in a series of Poster Symposia that run at the same time as concurrent sessions. During these 75 minute poster symposia, 12-15 posters on a similar theme will be grouped together in a room. Posters will be displayed on large boards and have a table underneath for accompanying materials. The session will be introduced by a moderator, poster authors will be asked to provide a very brief introduction of their poster, and then attendees will be free to move about the room to speak with poster presenters directly for the remainder of the session. Attendees are also welcome to move between symposia rooms and view posters on other topics. Conference posters submitted ahead of time are also available electronically in the conference app and linked below.




Presenters

Assessment of Preparedness and Response to Emergencies or Disasters in Families with Children with Suspected or Diagnosed Developmental Disabilities
Carol Salas-Pagan, Psy. D., Director, Institute on Developmental Disabilities, UCEDD

Families faced many challenges in meeting their health needs and the vulnerability of their children with disabilities during emergencies and disasters. Service providers are important sources of information for these families before and during emergencies and can facilitate preparedness activities. The main objective of this study was to describe the emergency preparedness strategies and needs of families with children with DD during Hurricane Maria in Puerto Rico.


Participation, Inclusion, Support, and Strength-Based Initiatives of a Maine LEND Self-Advocate and his Mentor
Kathryn Loukas, OTD, MS, OTR/L, FAOTA, Maine LEND Training Director, The Maine LEND Program

The role of a self-advocate on a LEND team is evolving. Kaufman & Baer (2015) outline challenges and strategies to inclusion of self-advocates in LEND training. This poster highlights the success of a medium term self-advocate trainee whose strengths in policy and desire to learn led to successful inclusion. Participation in LEND included individual goals, specific programs, teaching/learning strategies, the trainee/mentor relationship, and policy initiatives.

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ASSESSING PARENTAL AND PROFESSIONAL PERCEPTIONS AND NEEDS REGARDING GUARDIANSHIP AND SUPPORTED DECISION-MAKING
Patricia Patrick, DrPH, Chief Academic Officer Co UCEDD Director, Westchester Institute for Human Development

This poster presents the results of an online survey distributed to parents and professionals to: 1) determine their levels of understanding, perceptions and attitudes about guardianship vs. SDM; 2) ascertain what, if any, information do parents wish to receive about guardianship and/or SDM; and, 3) identify the preferred method of delivery for the desired information.

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Tools for Successfully Transitioning Young Adults with Neurologic Conditions
Ann Tilton, M.D., Professor of neurology and pediatrics, Children's Hospital of New Orleans

This presentation will give an overview of the Child Neurology Foundation�s tools that are available to manage the process of transitioning a child with neurologic related disabilities to adult medical care. You will leave with concrete resources and principles for a transition process whether you are a caregiver, clinician, or patient.

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Are There Gender Differences In Social Inclusion of Children with Autism?
Maria Lucia Moran, , University of Oviedo

We assess if there are gender differences in social inclusion of children and adolescents with comorbid diagnosis of autism spectrum disorder and intellectual disability. With this aim, we controlled the effect of variables such as level of supports needs, intellectual disability, and age. Then, we tested if there was item differential functioning. Results based on 420 participants will be presented. Implications for professionals, researchers, and policy makers will be discussed.

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Self-determination of Children and Adolescents with ASD: a Systematic Review
Maria Lucia Moran, , University of Oviedo

This presentations will describe systematic review of the literature concerning self-determination of children and adolescents with autism spectrum disorder (ASD). The purpose was to identify existing assessment and intervention methods. A comprehensive interpretation of the results across eligible quantitative and qualitative studies will be provided as well as implications for research and practice to guide the field in enhancing the self-determination of children and adolescents with ASD.

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National Core Indicators and Monitoring Person-centered Practices at a Systems Level: The Challenge of Standardized Measurement of Individualized Supports
Dorothy Hiersteiner, , Human Services Research Institute

I/DD systems aim for consistent person-centered practices. Most state I/DD agencies gather data on quality-of-life, service satisfaction and other outcomes. National Core Indicators' In-Person Survey presents an example of a standardized monitoring approach to demonstrate the results of person-centered practices in systems. Presenters will discuss NCI's data reflecting person-centeredness, and how states use NCI data on person-centeredness. Opportunities to act on what is learned will be presented.


ReDiscovery Training and Education on the Needs of Individuals with Disabilities and Access and Functional Needs Following Hurricane Harvey
Kayla S. Sweet, Ph.D., Project Coordinator, Center on Disability and Development, UCEDD

The Center on Disability and Development at Texas A&M University and the Texas Center for Disability Studies at the University of Texas at Austin created Project ReDiscovery to support individuals with disabilities recovering from Hurricane Harvey. ReDiscovery provides training, technical assistance, and educational materials for case managers, disaster- and disability-related organizations, and emergency personnel on long-term recovery services and resources for individuals with disabilities and access and functional needs.

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The Vanderbilt Kennedy Center�s Community Advisory Council: Building Community and Leading Change
Evon Lee, PhD, Associate Professor of Pediatrics, Vanderbilt University, UCEDD/LEND

Community Advisory Councils (CAC) guide the leadership of UCEDDs and partner in the planning, implementation and evaluation of activities designed to enhance the lives of individuals with intellectual and developmental disabilities (IDD) and their families. However, developing a dynamic and effective CAC can be challenging. This poster describes features of the Vanderbilt Kennedy Center�s CAC that promote creativity, community, and collaboration.

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Emergency Responders' Training in Working with Individuals with Disabilities
Heather Kwolek, MA, , A. J. Pappanikou Center for Developmental Disabilities, UCEDD/LEND

Emergency responders, including law enforcement and fire safety officials, impact the lives and safety of all Americans. Training for emergency responders allows them to meet people�s needs safely, efficiently, and well. This presentation reviews survey research conducted with emergency responders in Connecticut examining what training they received in interacting with individuals with disabilities and how that training was given, in an attempt to gather information to improve emergency responder training.

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Understanding Experiences of Caregivers of Children with Disabilities through Photovoice
Renee Hepperlen, , Institute on Community Integration, UCEDD/LEND

In low- and middle-income countries, a link exists between caring for children with disabilities and challenging life circumstances. Within Zambia, parents of children with disabilities face significant stigma and discrimination due to taboo beliefs about the causes of disability, adverse attitudes, and sub-par treatment of people with disabilities. This session presents a photovoice study completed in Zambia to understand the experiences of parents of CWD.


Disability Awareness for First Responders and the Community
Howard Zlamal, M.Ed, LEND Faculty, The University of Arizona, LEND

Good communication between first responders and individuals with disabilities is critical when responding to emergencies. First responders need to know as much as possible about a situation to make proper decisions and individuals must know what is happening to respond accordingly to situations, obtain assistance, etc. Join us as we �build a line of communication� between first responders and those with disabilities to enhance safety.

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Mapping the Literature on the Essential Characteristics of Self-Determination
Kathryn Burke, MEd, , Institute on Disabilities, UCEDD

This review maps the literature on the essential characteristics of self-determination (volitional action, agentic action, and action-control beliefs) outlined in Causal Agency Theory to identify how they have been theorized and examined in research, discern any significant gaps in the knowledge base, and serve as the basis for recommendations to the field for utilizing what is known and expanding upon it in future research and practice.