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Concurrent Sessions Group 5

Tuesday, November 5, 2024

2:15 pm - 3:30 pm

Meeting Level

Concurrent sessions are 75-minute small group discussions or panel presentations.

Meetings & Sessions

Family Support: Practical Reasons and Tips For Effectively Partnering with Families Across the Lifespan

This panel session will begin with a working definition of family support and a summary of family support work. Speakers will take a lifespan approach. All members of the AUCD Family Support Special Interest Group (SIG), speakers will share examples of work across the lifespan that has meaningfully included families in a variety of roles, from co-creators, to reviewers, to researchers.

Presenter(s)

Katie Herron, PhD

Director, Early Childhood Center Indiana Institute on Disability and Community, UCEDD

Co Presenter(s)

Stephanie Coleman, BBA, KS - Schiefelbusch Institute for Life Span Studies, UCEDD/LEND
Amy Clawson, BA, OH - University of Cincinnati UCE, UCEDD/LEND
Michelle Reynolds, PhD, KS - Schiefelbusch Institute for Life Span Studies, UCEDD/LEND

Building Bridges: Transforming Care for Children and Youth with Special Health Care Needs through Creative Partnerships in New York State

A multidisciplinary team from the three New York State UCEDDs will describe their multi-year process of providing technical assistance to local Children and Youth with Special Health Care Needs (CYSHCN) Programs. The partnerships between the three UCEDDs and the evolution of the relationships they have cultivated with local CYSHCN Programs will be highlighted. Additionally, results of an evaluation of these efforts will be presented including successes and challenges.

Presenter(s)

Sabrina Smith, MPA, MPH

Sr. Public Health Manager Strong Center for Developmental Disabilities, UCEDD/LEND

Co Presenter(s)

Mariela León-Thomas, BSc. PT, MSW, URMC, NY - Strong Center for Developmental Disabilities, UCEDD/LEND
Abigail Beer, MPH, NY - Westchester Institute for Human Development, UCEDD/LEND
Sabrina Moore Talbot, MS, URMC, NY - Rose F. Kennedy Center, UCEDD/LEND

Contributing Author(s)

Angel Morales, MPH, NY - Strong Center for Developmental Disabilities, UCEDD/LEND
Miriam Franco, NY - Rose F. Kennedy Center, UCEDD/LEND
Sabrina Smith, MPH, URMC, NY - Strong Center for Developmental Disabilities, UCEDD/LEND

Creative Arts Therapy as a Resource for Mental Health Treatment and Community Building

Two therapists (music therapist and dance/movement therapist) will promote creative arts therapies by incorporating case studies and experiential components. Presenters will review research and provide case narratives that demonstrate how creative arts therapies can support the mental health of adults with neurodevelopmental disabilities. The attendees will experience the benefits of creative arts interventions and better understand how they can be applied to supporting needs of individuals with neurodevelopmental disabilities.

Presenter(s)

Matthew Brady, MS

SUNY Brooklyn, LEND

Co Presenter(s)

Amber Supernor, MS, NYC Health + Hospitals/Kings County, NY - SUNY Brooklyn, LEND

The Role of UCEDDs in Inclusive Postsecondary Education and State Partnerships: Enhancing Higher Education for Students with Intellectual Disability

Higher education for students with intellectual disability aligns with UCEDD's mission and core functions. Addressing poor transition services and employment outcomes, these programs serve as state models, strengthening relationships with key state partners. Inclusion benefits the entire campus, enriching the community and enhancing learning environments. Four UCEDD directors will discuss their support for these initiatives, highlighting their multifaceted impact.

Presenter(s)

Susanna Miller-Raines,

Institute for Community Inclusion/Boston Children's Hospital, UCEDD/LEND

Co Presenter(s)

Randall Owen, PhD, NV - Nevada Center for Excellence in Disabilities, UCEDD/LEND
Amy Hewitt, PhD, MN - Institute on Community Integration, UCEDD/LEND
Derek Nord, PhD, IN - Indiana Institute on Disability and Community, UCEDD
Lori Garnes, PhD, ND - North Dakota Center for Persons with Disabilities, UCEDD

IDD-TRANSFORM: Centering IDD Voices in Health Research

IDD-TRANSFORM is a collaborative and sustainable partnership between health researchers, adults with intellectual and developmental disabilities (IDD), caregivers, healthcare providers, and IDD community organizations. The mission of IDD-TRANSFORM is to improve health care and health outcomes for adults with IDD by engaging and centering the voices of adults with IDD. IDD-TRANSFORM has partnered with Special Olympics and other community partners to collaborate with 100+ members in the IDD community.

Presenter(s)

Sydney Walls, MPH

Research Coordinator Schiefelbusch Institute for Life Span Studies, UCEDD/LEND

Co Presenter(s)

Megan Cvitanovic, Stanford Center for Biomedical Ethics
Holly Tabor, PhD, Stanford Center for Biomedical Ethics
Justin Steinberg, MA, SCBE/AADMD/Special Olympic Northern California

Translational Science Seminar Series Disability as Diversity: Reducing Researcher Roadblocks (D2/R3)

About 25% of adults in the U.S have a disability - just 4% of NIH grants are disability related. People with disabilities (PWD) experience poorer health than their peers. Structural barriers, discrimination, ableism, and exclusion criteria are among the roadblocks to inclusion. "Disability as Diversity: Reducing Researcher Roadblocks" (D2/R3) is a mixed methods study to categorize these roadblocks and test an intervention to mitigate them.

Presenter(s)

Karen Bonuck, PhD

P.I Rose F. Kennedy Center, UCEDD/LEND

Co Presenter(s)

Patrick George III, MSSR, Albert Einstein College of Medicine/Montefiore
Mark Harniss, PhD, WA - University of Washington Institute on Human Development and Disability, UCEDD/LEND
Frank Meeuwis, MSSW, Consultant for D2/R3

Perspectives on Health Equity in Accessing Long-Term Services and Supports (LTSS) for Individuals with I/DD

Individuals with intellectual and/or developmental disabilities (I/DD) often face challenges when accessing and receiving equitable, person-centered long-term services and supports (LTSS). This panel will discuss the barriers that individuals and their caregivers face across the LTSS delivery system, highlight firsthand experiences from focus group findings, and introduce policy recommendations for creating a more equitable system of care.

Presenter(s)

Giselle Torralba, MPH

Senior Analyst ATI Advisory

Co Presenter(s)

Katherine Hempstead, PhD, Robert Wood Johnson Foundation
Lauren Erickson, MPH, Institute for Exceptional Care

Supporting Healthcare Access for Youth with Neurodevelopmental Disabilities

Youth with neurodevelopmental disabilities (NDDs) face significant obstacles accessing health care, contributing to long-term health disparities. This session will describe the first peer-reviewed consensus statement establishing a standard of care in healthcare settings for youth with NDDs, and explore lived experiences and recommendations for implementation from professionals and advocates. Attendees will be engaged to contribute their own perspectives and leverage the presented framework in clinical, research, educational, and advocacy efforts.

Presenter(s)

Marilyn Augustyn, MD

Boston Medical Center

Co Presenter(s)

Cy Nadler, PhD, Children's Mercy Kansas City
Yetta Myrick, DC Autism Parents
Patrick Forgey, IN - Indiana University School of Medicine, LEND

State of the States Data Ambassador Program: Data Literacy and Accessibility Training for Emerging Leaders

The State of the States Data Ambassador Program is a partnership between The State of the States in Intellectual and Developmental Disabilities Longitudinal Data Project of National Significance (PNS) and AUCD focused on establishing regional cohorts of UCEDD/LEND Trainees knowledgeable in administrative and national ID/DD data and data accessibility to advance leadership in policy, education, research, and practice. The session will share outcomes from the inaugural cohort of Data Ambassadors.

Presenter(s)

Emily Shea Tanis, Ph.D.

Associate Research Professor Schiefelbusch Institute for Life Span Studies, UCEDD/LEND

State Advocacy: How to Leverage Connections with Your State to Influence Change

This session, presented by the Autism Society of America and the Association of People Supporting Employment First (APSE) and the National Down Syndrome Society (NDSS), will focus on state advocacy. Participants will leave with an understanding of how state legislatures operate, what the current scene of disability policy is in the states, and how to work within your network to influence change.

Presenter(s)

Delancy Allred,

Autism Society

Co Presenter(s)

Julie Christensen, APSE
Genevieve Thompson, NDSS

Contributing Author(s)

Aaron Rock, Autism Society of America

De-Mystifying the PCORI Process: CER and Engagement Awards

Ever wonder what PCORI is looking for in funding applications? Learn from awardees about the application process, contract negotiation, and conduct of Comparative Clinical Effectiveness Research and Engagement Awards projects through completion. Project leaders, including people with lived experience who are members of project teams, will provide insights on their experience and lessons learned. PCORI's IDD portfolio and funding opportunities will be discussed.

Presenter(s)

Meghan Warren,

Patient-Centered Outcomes Research Institute (PCORI)

Co Presenter(s)

Lauren Kenworthy, PhD, Children's National Hospital; George Washington University Medical School
Deanna Herma, PhD, University of Illinois at Chicago
Karrie A. Shogren, PhD, KS - Kansas Intellectual and Developmental Disabilities Research Center - IDDRC
Eric Moody, PhD, WY - Wyoming Institute for Disabilities, UCEDD
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