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AUCD - Concurrent Sessions

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Tuesday, November 13, 2018 3:00 PM - 4:15 PM

Session Description

Concurrent Sessions 46-54




Presenters

Working through the Intellectual and Developmental Disability Data Conundrum: Strategies for Collecting Better Data to Inform Program and Policy
Andrew Morris, MPH, Policy Analyst, Administration for Community Living
Jennifer Johnson, PhD, Administration for Community Living, Washington, DC, United States;
Susan Havercamp, PhD, Columbus, OH, United States, OH - The Nisonger Center, UCEDD/LEND;
Gloria Krahn, PhD, MPH, Former UCEDD Director and Oregon State University, Corvallis, OR, United States;
Alixe Bonardi, MPH, Former Trainee and Human Services Research Institute, Boston, MA, United States;
Sheryl Larson, PhD, Minneapolis, MN, United States, MN - Institute on Community Integration, UCEDD/LEND;

The Administration on Intellectual and Developmental Disabilities (AIDD) along with external experts have been exploring how to get better data and an updated picture of health status and prevalence of individuals with I/DD across the States. This session will provide an update on efforts which have focused on developing survey questions for use on national studies and the use of state administrative data sets for better understanding this population.

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Sometimes We're Pushing . . .Sometimes We're Pulling . . . Working with State Agencies to Influence Policy and Practice
Teresa Grossi, Ph.D., Director of Strategic Developments, Indiana Institute on Disability and Community, UCEDD
Derek Nord, Ph..D.,, Indiana University, Bloomington, IN, United States, IN - Indiana Institute on Disability and Community, UCEDD;
Amy Hewitt, Ph.D.,, University of MN, Minneapolis, MN, United States, MN - Institute on Community Integration, UCEDD/LEND;
Margaret Gilbride, J.D., Rutgers, New Brunswick, NJ, United States, NJ - The Boggs Center on Developmental Disabilities, UCEDD/LEND;
, IN, United States;
, IN, United States;

AUCD network has an abundance of expertise to help state agencies move forward to develop effective partnerships to impact the lives of individuals with disabilities and their families. This presentation will provide examples of how three different UCEDDs (Indiana, Minnesota, and New Jersey) work at varying levels within their State agencies of Developmental Disabilities/Mental Health, Vocational Rehabilitation, and Education to influence policy, provide training, technical assistance and evaluation activities.


Early intervention outcomes: Are the data telling us what we need to know?
Mary Beth Bruder, Ph.D., Professor, A. J. Pappanikou Center for Developmental Disabilities, UCEDD/LEND
Steven Rosenberg, Ph.D., Aurora, CO, United States, CO - JFK Partners/University of Colorado Health Sciences Center, UCEDD/LEND;
Batya Elbaum, Ph.D., Miami, FL, United States, FL - Mailman Center for Child Development, UCEDD/LEND;
Cordelia Robinson Rosenberg, Ph.D., Aurora, CO, United States, CO - JFK Partners/University of Colorado Health Sciences Center, UCEDD/LEND;

This panel will discuss limitations in measures of EI child outcomes. We will discuss alternative ways of using data that will allow us to better understand the impact of Part C EI services. Lastly the panel will address racial and socioeconomic disparities in accessing Part C EI services and the need for data that allow us to track disparities in enrollment by families in EI.


Including Parents Leaders Across Cultures: More Than Just An Invitation and Translation
Oanh Bui, MA, MHA, Diversity Felow, Institute for Community Inclusion/Boston Children's Hospital, UCEDD/LEND
Oanh Bui, MA, MHA, Diversity Fellow, Boston, MA, United States, MA - Institute for Community Inclusion/Boston Children's Hospital, UCEDD/LEND;
Asha Abdullahi, BA, Diversity Fellow, Boston, MA, United States, MA - Institute for Community Inclusion/Boston Children's Hospital, UCEDD/LEND;
Olga Lopez, M.Ed, LEND Fellow, Boston, MA, United States, MA - Eunice Kennedy Shriver Center, UCEDD/LEND;

Increasing parent representatives from diverse community becomes popular in the DD network. The panelist of three cultural brokers from the Somali, Spanish and Vietnamese communities will provide their insights on success and challenges including diverse parent leaders to the DD network. The panelist will also discuss strategies to broaden outreach to the diverse communities.


An Inclusive Community Starts with Us: Three UCEDDs Work to Model Best Practices in Inclusion and Accessibility
MaryAnn Allsop, Program Assistant, Institute on Disability, UCEDD
Arthur Frick, Durham, NH, United States, NH - Institute on Disability, UCEDD;
Kathy Bates, Durham, NH, United States, NH - Institute on Disability, UCEDD;
Ken Capone, Baltimore, MD, United States, MD - Kennedy Krieger Institute Intellectual and Developmental Disabilities Research C - IDDRC;
Tami Goldsmith, Baltimore, MD, United States, MD - Kennedy Krieger Institute Intellectual and Developmental Disabilities Research C - IDDRC;
Jeanne Nauheimer, Burlington, VT, United States, VT - Center on Disability & Community Inclusion, UCEDD;

This collaborative, multi-center panel discussion will explore what 3 UCEDDs are doing to make their individual organizations more inclusive and accessible through objectively evaluating and remediating institutional procedures, physical spaces, and digital documents.


We Belong in Our Own Research
Becca Lory BCCS, , Evolving Skye, LLC
Brigid Rankowski, MS, The Way We Move, Portland, ME, United States;
Stephen Shore, EdD, Adelphi University, Garden City, NY, United States;
Teal Benevides, Phd, MS, OTR/L, Augusta University, Augusta, GA, United States, DC - Children's National Medical Center - IDDRC;
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Autistic adults experience multiple, chronic, and often preventable health conditions in adulthood. The majority of research literature fails to authentically include autistic adults in the development of research to address pressing health needs. This panel will include discussion and reflection of Community Council members of the AASET project reflecting on the process of involvement in pre-research priority setting activities. Lessons learned for future engagement will be discussed.

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Achieving Inclusive Communities by Improving Disability Access in Medical Offices: An Overview of the Centene Provider Accessibility Initiative (PAI)
Sarah Triano, Director, Product Development, Centene Corporation
Mary Strasser & Dr. April , Bellamy-Peyton, IlliniCare, , IL, United States;
Bob Barone, Superior Health Plan, Austin, TX, United States;
Natalie Lukaszewicz, Buckeye Health Plan, Columbus, OH, United States;
Pam Carpenter, Health Net, Stockton, CA, United States;
Kelly Buckland, National Council on Independent Living (NCIL), Washington, DC, United States;
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Medicaid consumers with disabilities receive less preventative care than those without disabilities because of inaccessible medical offices and services. In 2017, Centene launched a nationwide Provider Accessibility Initiative (PAI) in partnership with the National Council on Independent Living (NCIL) to address this. Learn about the PAI and the Centene Barrier Removal Fund, results to date, lessons learned, and future efforts to increase access in medical offices for consumers with disabilities.

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Strategies for Providing Disability and Health Education across Varied Audiences and Settings
Jana Peterson-Besse, MPH, PhD, Associate Professor of Public Health, Pacific University
Tara Lutz, PhD, MPH, Farmington, CT, United States, CT - A. J. Pappanikou Center for Developmental Disabilities, UCEDD/LEND;
George Gotto, PhD, Kansas City, MO, United States, MO - University of Missouri, UCEDD/LEND;
Mitchell Levitz, Valhalla, NY, United States, NY - Westchester Institute for Human Development, UCEDD/LEND;
Derrick Willis, MPA, Iowa City, IA, United States, IA - Center for Disabilities and Development, UCEDD/LEND;
Adriane Griffen, DrPH, MPH, AUCD, Silver Spring, MD, United States;

Integrating disability information into public health education is a fundamental strategy to reducing health disparities experienced by people with disabilities. This panel will present strategies to integrate disability-specific education into public health and health education efforts across audiences and settings. Topics include incorporating disability studies into graduate and undergraduate public health education, delivering disability education to health care providers, and providing inclusive community-based health education efforts for the general public.

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Family Expertise: Working with Families to Develop Solutions that Work
Susan Yuan, Ph.D., Emerita, Center on Disability & Community Inclusion, UCEDD
Clarissa Hoover, MPH, Family Voices, Albuquerque, NM, United States;
Dana Yarbrough, M.A., M.S., Richmond, VA, United States, VA - Partnership for People with Disabilities, UCEDD/LEND;
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Family wisdom and experience set the stage for three presentations focusing on believing and supporting alternative communication, generational differences, supermoms, and best practices for engaging with ALL families.

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Inclusive Postsecondary Education for Youth with I/DD: Best Practices in Inclusion, Assessment, and Collective Impact
Carol Laws, PhD, Clinical Associate Professor, Institute on Human Development and Disability, UCEDD
Kathy Miller, MSW, Temple University, Philadelphia, PA, United States, PA - Institute on Disabilities, UCEDD;
Susanna Miller-Raines, MSW, Center for Leadership in Disability, Atlanta, GA, United States, GA - Center for Leadership in Disability at Georgia State University, UCEDD/LEND;
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In this session, leaders from three UCEDD's who are spearheading best practices in Inclusive PostSecondary Education (IPSE) will share their approaches to fully including students within the enrolled student body, developing and assessing student learning outcomes, and scaling up IPSE programs in a state through collective impact.


HCBS Settings Rule Updates and How UCEDDs Can Play a Role in Implementation In Their States
Alison Barkoff, JD, Director of Advocacy, Center for Public Representation
Celia Feinstein, MA, Philadelphia, PA, United States, PA - Institute on Disabilities, UCEDD;
Angela Martin, MSW, Detroit, MI, United States, MI - Developmental Disabilities Institute, UCEDD/LEND;
Caitlin Crabb, MPH, Chicago, IL, United States, IL - Institute on Disability & Human Development, UCEDD/LEND;
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This panel will present updates on CMS guidance and state implementation of the HCBS Settings Rule and provide examples of how UCEDDs can play an important role in implementation in their states. Learn more about the initiatives of the UCEDDs in Illinois, Michigan and Pennsylvania around the HCBS settings rule.

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