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AUCD - Concurrent Sessions Group 2

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Monday, November 15, 2021 3:30 PM - 4:45 PM

Location: Virtual

Session Description

Concurrent sessions will take place as live presentations during specific times on Monday and Tuesday of the virtual conference. Concurrent presentations will be live and there will be an option for attendees to "chat" with the presenters during the presentation. More information about how to access the concurrent presentations on the virtual platform and "chat" with presenters will be shared with registered, virtual conference attendees.




Presenters

Allies in Leadership, Policymaking, and System's Change: A Leadership Training Program

Presenter(s)

Tiffany Banks, MSW, Executive Director, Rocky Mountain Sibs

Co-Presenter(s)

Homar Enriquez, BSBA, Rocky Mountain Sibs, Denver, CO;


Contributing Author(s)

Joelle Brouner, MPA, Colorado Developmental Disabilities Council, Denver, CO;


Allies in Leadership, Policymaking, and System's Change (ALPS) is a leadership training program created through a collaborative partnership between the Colorado Developmental Disabilities Council and the Colorado state chapter of the Sibling Leadership Network, Rocky Mountain Sibs. This presentation is suited for any discipline interested in expanding leadership training in their local community.


Caregiving experiences and roles: supporting the present and planning for the future

Presenter(s)

Derek Nord, PhD, Director and Associate Professor, Indiana Institute on Disability and Community, UCEDD

Co-Presenter(s)

Kristin Hamre, PhD, Indiana University School of Social Work, Bloomington, IN, United States;
Randall Owen, PhD, Reno, NV, United States, NV - Nevada Center for Excellence in Disabilities, UCEDD/LEND;
Ruby Blatz, PhD, Reno, NV, United States, NV - Nevada Center for Excellence in Disabilities, UCEDD/LEND;
Lynne Tomasa, PhD, Tucson, AZ, United States, AZ - Sonoran UCEDD;


Contributing Author(s)

John Andresen, PhD abd, Bloomington, IN;
Yumi Shirai, PhD, Tucson, AZ, United States, AZ - Sonoran UCEDD;


This session presents research on caregiving and families with people with IDD. Studies use diverse methodologies to address important topics including: caregiver health and economic engagement across the country, perspectives from people with disabilities and their parents around decision-making during the COVID-19 pandemic, and a retrospective look at families ten years after they a formalized future plan. Relevant disciplines: social work, public health, education, public policy, family studies


Connect with Plain Language

Presenter(s)

Paula Rabidoux, PhD, , The Nisonger Center, UCEDD/LEND

Co-Presenter(s)

Liz Weintraub, AUCD, Washington DC, DC, United States;
Christine Brown, Columbus, OH, United States, OH - The Nisonger Center, UCEDD/LEND;
3. Abirami Duraiswamy , Davis, CA, United States, CA - UC Davis at the MIND Institute, UCEDD/LEND;
Nancy Ward, Oklahoma Disability Law Center, Oklahoma City, OK, United States;
Max Burrows, Green Mountain Self Advocates, Montpelier, VT;


A panel consisting self-advocates, a family members, and a researcher will discuss their approaches and experiences using plain language (PL) in our research, advocacy, and teaching. The reasons PL is important to the field in particular as it speaks to Diversity, Equity, and Inclusion will be discussed and resources on PL will be provided.


Health promotion curriculum for Young Adults with IDD transitioning to work.

Presenter(s)

Maryellen Daston, PhD, Project Manager, Cincinnati Children's Hospital/Project SEARCH

Co-Presenter(s)

Karen Guo, OTR/L, Abilities First, MIddletown, OH, United States;
Beth Marks, PhD, Chicago, IL, United States, IL - Institute on Disability & Human Development, UCEDD/LEND;
Jasmina Sisirak, PhD, Chicago, IL, United States, IL - Institute on Disability & Human Development, UCEDD/LEND;


Health, both mental and physical, is crucial to the well-being and success of individuals with disabilities. The comprehensive and adaptable HealthMatters curriculum helps teenagers and young adults learn about physical activity, nutrition, and stress management. In this presentation, you will learn how the curriculum was integrated into the Project SEARCH employment-preparation program, and how to support transition-age individuals with IDD to work towards a healthy lifestyle.


Social Security Beneficiaries' Perceptions of the Impact of Work Incentives Planning & Services in their Return to Work: Follow-up Study

Presenter(s)

Rose Angelocci, Ph.D, , Louisiana State University Human Development Center - New Orleans, UCEDD/LEND

Co-Presenter(s)

Susan Killam, M.Ed., Louisiana Benefits Planning Services, New Orleans, LA, United States, LA - Louisiana State University Human Development Center - New Orleans, UCEDD/LEND;
Donald Leger, B.A., Louisiana Benefits Planning Services, New Orleans, LA, United States, LA - Louisiana State University Human Development Center - New Orleans, UCEDD/LEND;


Contributing Author(s)

Phil Wilson, Ph.D., New Orleans, LA, United States, LA - Louisiana State University Human Development Center - New Orleans, UCEDD/LEND;


For twenty years, the Louisiana Benefits Planning services (LSU WIPA) program has provided counseling and guidance on work incentives and employment services/supports so that individuals receiving Social Security benefits based on disability can make informed decisions about work. Presenters will share experiences of recipients of benefits planning services and the impact benefits planning had on their decision-making in their return to work.


Supporting the Well-Being of Children with Intellectual and Developmental Disabilities during the COVID-19 Pandemic

Presenter(s)

Maureen van Stone, JD, Director, Kennedy Krieger Institute, UCEDD/LEND

Co-Presenter(s)

Tyler Walsh, MPH, St. Louis, MO, United States, MO - Washington University in St. Louis Intellectual and Developmental Disabilities R - IDDRC;
George Gotto, PhD, Kennedy Krieger Institute, Kansas City, MO, United States, MO - University of Missouri, UCEDD/LEND;
Luke Kalb, PhD, Baltimore, MD, United States, MD - Kennedy Krieger Institute Intellectual and Developmental Disabilities Research C - IDDRC;
Nancy Mueller, MPH, St. Louis, MO, United States, MO - Washington University in St. Louis Intellectual and Developmental Disabilities R - IDDRC;


Contributing Author(s)

^, , MO - University of Missouri, UCEDD/LEND;


Parents and guardians of children with intellectual and developmental disabilities (IDD) may be reluctant to return to in-person school. Our study examined the positivity-rate of COVID-19 school transmission in children with IDD. Data from weekly asymptomatic saliva-based COVID-19 testing in schools, focus group discussions and fuzzy cognitive mapping findings on facilitators and barriers to COVID-19 testing, and survey results will be shared. This is an interdisciplinary session. .


Disparities in IDD Supports and Services:Lived Experiences During the Early Phase of the COVID-19 Pandemic in the District of Columbia

Presenter(s)

Joan Christopher, JD, research instructor, director of community service, Georgetown University Center for Child & Human Development, UCEDD

Co-Presenter(s)

Thomas Mangrum, Washington, DC, United States, DC - Georgetown University Center for Child & Human Development, UCEDD;
Thelma Green, Washington, DC, United States, DC - Georgetown University Center for Child & Human Development, UCEDD;
Heidi Case, Washington, DC, United States, DC - Georgetown University Center for Child & Human Development, UCEDD;


GUCEDD faculty interviewed 11 persons with disabilities who live independently with supports or with family in the Washington, DC area about the impact of COVID-19 on their lives. Their personal narratives were analyzed using A Disparities Framework: Intellectual and Developmental Disabilities Services and Supports.


Beyond PAR: Making Publication and Information Dissemination More Participatory and Inclusive

Presenter(s)

Matthew Wappett, PhD, Executive Director, Institute for Disability Research, Policy & Practice, UCEDD/LEND

Co-Presenter(s)

Wendy Parent-Johnson, PhD, Tucson, AZ, United States, AZ - Sonoran UCEDD;
Raphael Raphael, Honolulu, HI, United States, HI - Center on Disability Studies, UCEDD/LEND;


This session is led by the editors of three peer-reviewed academic journals to highlight different approaches to involving self-advocates and family members in the publication process.� This session will provide an opportunity to explore how individuals with lived experience can help shape publication priorities and participate in editorial processes.� Participants will also have an opportunity to share their ideas�about how to include self-advocates and family members in the dissemination process.


Let's Talk about Sex: Lessons from the Sex Talk for Self-Advocates Project

Presenter(s)

Lindsay Sauve, MPH, , Center for Learning and Leadership, UCEDD/LEND

Co-Presenter(s)

Lindsey Mullis, MPH, Lexington, KY, United States, KY - Interdisciplinary Human Development Institute, UCEDD;
Katherine McLaughlin, MEd, Elevatus Training, Westmoreland, NH, United States;


Contributing Author(s)

Max Barrows, Montpelier, VT, United States;
Erica Thomas, MS, Washington, DC, United States, DC - Georgetown University Center for Child & Human Development, UCEDD;


This presentation will share the results of the Sex Talk for Self-Advocates webinar series, a project of the AUCD Sexual Health Special Interest Group and a collaboration between self-advocates, UCEDDs, and sexual health educators. The series reached audiences across the country and provided frank, honest answers to self-advocate questions about sexuality and sexual health from panelists and sexual health educators with lived experience.


Disability Abuse Response Teams (DARTs) - Expanding Collaboration to Better Serve Survivors with Disabilities in Alaska

Presenter(s)

Kelley Hartlieb, BA, Justice Initiatives Project Coordinator, Center for Human Development, UCEDD/LEND

People with disabilities experience higher rates of abuse than the general population. However, they often encounter barriers when accessing victim support services. Disability Abuse Response Teams bring together providers from various disciplines to meet the needs of survivors with disabilities. Learn how the evidence-based ECHO model was used to connect Alaskan DARTS to build a state-wide resource-sharing community, and 2) remove barriers/increase capacity to more effectively serve survivors with disabilities.


Developing Measures to Assess the Effectiveness of Home- And Community-Based Services in Supporting Person-Centered Outcomes

Presenter(s)

Sara Karon, PhD, Senior Health Policy Scientist , RTI International

Contributing Author(s)

Sara Karon, PhD, RTI International, Chicago , IL, United States;
Lindsay DuBois, PhD, Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab, Chicago, IL, United States;
Allen Heinemann, PhD, Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab, Chicago, IL, United States;
Jessica Presperin Pedersen, PhD, Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab, Chicago, IL, United States;
Dhrumil Shah, MPH, Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab, Chicago, IL, United States;
Antoinette Nelson-Rodriguez, Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab, Chicago, IL, United States;
Niveda Tennety, Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab, Chicago, IL, United States;


Measures of home- and community-based services (HCBS) quality abound, but measures with strong psychometric properties are needed to assure that HCBS effectively supports desired, person-centered outcomes. Person-centeredness is required of Medicaid HCBS programs. We are developing new outcome measures that are consistent with the National Quality Forum domains and measure the effectiveness of HCBS supports in achieving person-centered goals. We will share updates on our work and opportunities for collaboration.


Learning Together, Learning Myself: Lived Experience and Becoming an Autistic Autism Researcher

Presenter(s)

Helen Rottier, MS, PhD Candidate, Institute on Disability & Human Development, UCEDD/LEND

Autistic people are experts on our lived experiences, but due to ableism, face many challenges in having our expertise recognized in mainstream autism research and across the academy. This presentation will explore how autistic scholars navigate ableism to tell our stories and contribute to the expanding knowledge on autism and neurodiversity in disability studies and beyond. The presenter will share her lived experiences as an autistic autism researcher.


Recruiting and retaining researchers and evaluators with lived experience in higher education: A critical reflection

Presenter(s)

Kathy Sheppard-Jones, PhD, , Interdisciplinary Human Development Institute, UCEDD

Co-Presenter(s)

Kathy Sheppard-Jones, PhD, Lexington, KY, United States, KY - Interdisciplinary Human Development Institute, UCEDD;
Chithra Adams, PhD, Lexington, KY, United States, KY - Interdisciplinary Human Development Institute, UCEDD;
Jacob Mason, Lexington, KY, United States, KY - Interdisciplinary Human Development Institute, UCEDD;
Taylor Barton, interior design major, Lexington, KY, United States, KY - Interdisciplinary Human Development Institute, UCEDD;
Phillip Rumrill, PhD, Lexington, KY, United States, KY - Interdisciplinary Human Development Institute, UCEDD;


Scant data are available around disability status of researchers and evaluators with disabilities. Limited measures find significant under-representation across faculty and staff in higher education. Recruiting and retaining people with lived experience in research highlights efforts to promote equity and inclusion. This interactive panel will describe organizational efforts in recruiting and retaining research and evaluation staff with lived experience at one university. Lessons learned and future directions will be presented


Balancing Uneven Scales: Practical Strategies to Address Power Differences in Diverse Stakeholder Groups

Presenter(s)

Kara Ayers, PhD, Associate Director, University of Cincinnati UCE, UCEDD/LEND

The proposed session invites a difficult but important conversation. Progress to diversify collaborations is exciting but without efforts to mitigate power dynamics within groups, recruiting diverse members can result in tokenism and only the illusion of inclusion. The proposed session aims to teach leaders how to promote equity within groups whose members hold different amounts of power. Participants will emerge with strategies to bolster a commitment to equity.