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AUCD - Live Poster Q&A Session

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Tuesday, November 16, 2021 3:30 PM - 4:45 PM

Location: Virtual

Session Description

Nearly 170 posters were accepted to the AUCD 2021 Virtual Conference and will be presented on the virtual conference platform as on-demand content. Poster presenters will also be available during a live Q&A session where attendees can ask questions and engage with presenters on a variety of topics. Topics for this Q&A session are listed below. You can find other topics on Tuesday's live Q&A session.

On the virtual platform, posters will be grouped by topic area and will be available for viewing starting on Wednesday, November 10 throughout the duration of the conference for attendees to view at their leisure. All posters will include an accessible PDF of an e-poster, and many will also include a captioned, short presentation video of the poster. More information about how to access posters on the virtual platform and how to chat with presenters during the live Q&A session will be shared with registered, virtual conference attendees.

 

Topics covered during this live Q&A session: 

  • Employment, Housing & Transportation
  • Health, Wellness, Recreation & Related Isssues
  • Mental Health
  • Parent/Family Involvement, Support & Respite
  • Racial, Ethnic & Cultural Diversity and Cultural & Linguistic Competence
  • Self-determination & Self-advocacy
  • Surveillance and Epidemiological Efforts
  • Systems-level Implementation, Demonstration, and Evaluation
  • Technology, Assistive Technology & Universal Design
  • Transition



Presenters

Creating an inclusive experience at every dental office

Presenter(s)

Sampada Deshpande, DDS, , Center on Human Development & Disability, UCEDD/LEND

The presenter is a young general dentist who has written a book to others in her field about how to go about creative a culturally and linguistically inclusive dental office in the community. You can use this book to help your friends find a general dentist to go to! If you are a provider, you can use this information to expand services offered in your clinic.


Equity for People with I/DD: Healthy Relationships Matter

Presenter(s)

Sharon Delvisco, DSW, CSW, MSW, CGMP, Training and Course Development Specialist, Team Dynamics, LLC

People with I/DD are often denied access to sex positive information about healthy and unhealthy relationships. Team Dynamics is piloting a 6-topic retreat style educational series about healthy & unhealthy relationships including consent, gender, identity, online & phone safety, sexual health & wellness, public & private, decision making, dating, love, and commitment. Access to accurate information in judgement free, safe spaces is critical for people with I/DD.


Visual Sensory Experiences as Described by Autistic Authors: A Thematic Analysis of Quotes from Autobiographies

Presenter(s)

Patricia Towle, PhD, Ph.D., Psychologist, Westchester Institute for Human Development, UCEDD/LEND

Sensory behaviors (SBs) are now part of the DSM-5 diagnostic criteria for Autism Spectrum Disorder. Research has shown visual behaviors in particular to be common. In this study, autobiographies by autistic authors (N=7) were read to extract quotes regarding their visual interests and aversions. A thematic analysis of 22 quotes did find consistent themes based on motion, colors, and brightness, as well as both pleasurable and uncomfortable reactions.


Barriers to obtaining medical equipment for people with disabilities and their families

Presenter(s)

Melanie Davis, Self-Advocate Trainee, Munroe-Meyer Institute of Genetics & Rehabilitation, UCEDD/LEND

This presentation is focused on concerns related to the availability of Durable Medical Equipment (DME) to eligible individuals. The ability for certain persons with disabilities is to benefit from full community participation is totally dependent on the availability of DME. Problems exist and appear to be increasing as to DME availability. This would be relevant to various disciplines: Physical Therapy, Occupational Therapy, Healthcare Policy, Maternal and child health.


COVID-19 vaccination and vaccine hesitancy among people with disabilities

Presenter(s)

Shreya Paul, MPA, , Institute on Disability, UCEDD

This presentation will describe the COVID-19 vaccination rate and reasons for not getting a vaccine among people with disabilities.


Social Lives of Students With Disabilities Who Use Online Education

Presenter(s)

Emma Peacock, BS in Psychology, Mx., Institute on Human Development and Disability, UCEDD

The COVID-19 Pandemic has increased the already growing number of students with disabilities (SWD) who participate in online education. Studies have looked into why parents choose alternative schooling options for SWD; there has been limited research that focuses on the student's perspectives. A qualitative study is being conducted to understand the perspective of SWD on alternative schooling and their social lives.


Coming Together for Self-Determined Transition in Kansas: Connecting Research, Lived Experience, and Partnerships for Systemic Change

Presenter(s)

Evan Dean, PhD, Associate Director, Schiefelbusch Institute for Life Span Studies, UCEDD/LEND

This presentation will describe a statewide, community-based planning project focused on enhancing successful transitions to competitive integrated employment, post-secondary education, and community living for Kansans with disabilities. We will (1) share outcomes from a statewide policy analysis and listening sessions with self-advocates, family members, and other stakeholders, and (2) engage in a panel discussion of self-advocates and family members on their experiences navigating the transition process.


Growth Exploration and Leadership Development: A Growth Mindset Intervention for Individuals with Disabilities

Presenter(s)

Akorede Teriba, Counseling Psychology PhD Candidate, Center for Disabilities and Development, UCEDD/LEND

Attendants will hear the theory behind the Growth Exploration and Leadership Development curriculum designed for the study and the process of a participant's experience. Attendants will experience portions of the curriculum by engaging in the Tell a Story activity with one another, wherein attendants will share a creative story about something they like to do and share a story about a time they had to overcome a challenge.


Using IMPACT WV�s Coordination of Services to Increase Vaccine Confidence in Families with Substance Use Exposure

Presenter(s)

Charlotte Workman, BS, CCRP, Program Manager, Center for Excellence in Disabilities, UCEDD/LEND

IMPACT WV works to create two-generational opportunities coordinating programs and services addressing barriers impacting infants� health and future development due to substance use exposure. A recent study examined COVID-19 vaccine readiness among people with substance use disorder. Nearly half of the participants reported that they were unwilling to take the vaccine. The established coordination of services will be used as a platform for dissemination of vaccine information.


Closing Healthcare Gaps for Children with Special Healthcare Needs In Kansas

Presenter(s)

Aderonke Oyetunji, , Schiefelbusch Institute for Life Span Studies, UCEDD/LEND

Children with medical complexities utilize various healthcare systems to address their unique needs. Hence, care coordination, communication, data sharing and surveillance efforts are often impacted for families, providers and government agencies. This project aims to build a well-functioning system of care for children with medical complexities in Kansas. This project is being conducted by Kansas LEND and the Kansas Department of Health and Environment, Special Health Services Programs.


Using machine learning to predict employment and day activity participation for people with intellectual and developmental disabilities

Presenter(s)

Matthew Bogenschutz, Ph.D., Associate Professor, Partnership for People with Disabilities, UCEDD/LEND

We used machine learning to predict employment and day activity participation for people with IDD using the National Core Indicators national dataset. Our model predicted employment and day outcomes with 89% accuracy in our testing sample and 80% accuracy in the holdout sample. The most significant predictor of employment was having an employment goal in one�s service plan. Other predictors also suggested potential for straightforward policy changes to affect outcomes.


Assessing a Statewide Partnership based on Collective Impact Framework - Use of Developmental Evaluation

Presenter(s)

Hamida Jinnah, PhD, Associate Research Faculty, Institute on Human Development and Disability, UCEDD

Georgia College Transition Partnership was convened to develop a plan for the creation of an innovative, actionable pilot project focused on providing supports for young adults on the autism spectrum that result in their successfully transitioning from college to employment or graduate school. Presentation focuses on using Developmental Evaluation to understand how the partnership is developing and adapting, what is working well, and what elements require greater attention.


Digital Storytelling with Hispanic/Latinx Individuals on Dual Diagnosis as a Critical Resource for Learning and Informing Future Research and Practices

Presenter(s)

Eduardo Ortiz, PhD, JD, Senior Research Associate, Institute for Disability Research, Policy & Practice, UCEDD/LEND

Hispanic/Latinx individuals with disabilities and mental health concerns, and their caregivers, experience distinct challenges before and after receiving a diagnosis. Unfortunately, there is a lack of diverse representation and considerations in research and services for multicultural populations. Presenters discuss interview themes demonstrating areas for improvement and lessons they�ve learned that promote equity, diversity, and inclusion. Presentation content is relevant for those in social work, psychology, special education, and related disciplines.


It Opened Up Another World for Them: Increasing Access and Equity in Early Childhood Special Education.

Presenter(s)

Michelle Schladant, Ph.D., ATP, Assistant Professor, Mailman Center for Child Development, UCEDD/LEND

The Step Up AT program integrates high leverage assistive technology (AT) practices, coaching, and multimedia resources to improve early learning for children with disabilities from culturally and linguistically diverse backgrounds. This session highlights findings from a two-year randomized control trial on experiences of teachers from diverse backgrounds engaged in a collaborative coaching model. Relevant for practitioners, we present lessons learned, including provision of AT support during the COVID-19 pandemic.


Mental Health and Adult Learning Disabilities in an Urban Setting

Presenter(s)

Monica McQuaid, PhD, Psychologist, REFK/CERC at Montefiore

Adults with learning disabilities frequently are diagnosed with co-occurring mental health disorders, including anxiety and depression. Literature suggests that mental health difficulties relate to the longstanding nature of these disabilities; access to clinical support may reduce psychosocial stress. Clients at an adult literacy program in Bronx, NY were assessed periodically for depression and anxiety symptoms. Over the course of treatment they were found to have reduced mental health symptomology.


A Telehealth Manual for Clinicians Working with Youth with Developmental Disabilities

Presenter(s)

Erin Rivelis, Ph.D., Psychologist, Rose F. Kennedy Center, UCEDD/LEND

With the reliance on telehealth increasing throughout the COVID-19 pandemic, the need for comprehensive resources to assist clinicians and patients in navigating this landscape is vital. This presentation will describe a telehealth manual created by a group of psychology and social work trainees as part of the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) fellowship.


Self-guided online intervention to build self-compassion among parents of children with developmental disabilities: Findings from a pilot trial

Presenter(s)

Ameena Ahmed, M.A., Psychology Doctoral Student, University of Cincinnati UCE, UCEDD/LEND

This poster presents findings from a pilot-trial of a self-guided online intervention developed to build self-compassion among parents of children with developmental disabilities (DDs). We describe the intervention, results, and parent feedback. Background on psychological functioning among parents of children with DDs is also presented to provide context and underscore the importance of supporting parents. This presentation will be helpful to parents, mental health providers, and anyone supporting parents needs.


Oklahoma LEND Team 2020-2021 Leadership Project: Understanding the Effects of the COVID-19 Pandemic on Oklahoma Organizations Serving People with Disabilities

Presenter(s)

Laura Shamblin, MD, Dr., Center for Learning and Leadership, UCEDD/LEND

The topic of our team project was the effects, both positive and negative, of the COVID-19 pandemic on organizations that serve individuals with developmental disabilities and their families. Our purpose was to find out what major challenges and positive changes developed within these organizations due to the pandemic. We discovered these by surveying employees of organizations via email. Members of 13 disciplines worked together on this project.


Developing and Measuring Staff Competencies for Person Centered Planning

Presenter(s)

Alixe Bonardi, OTR MHA, Senior Policy Specialist, Eunice Kennedy Shriver Center, UCEDD/LEND

The National Center on Advancing Person-Centered Practices and Systems developed Five Competency Domains for Staff Who Facilitate Person- Centered Planning. The presenters will describe the five domains, and how they were developed. Furthermore, the presenters will share their professional and personal experiences with person-centered planning and how an emphasis on the core competencies will advance person-centered planning and practice for people with disabilities.


Cleft Lip & Palate: The Impact on Speech & Feeding Development

Presenter(s)

Spencer Revels, Master of Science, M.S., CCC-SLP, Center for Disability Resources, UCEDD/LEND

This presentation serves to address barriers to access to care and parent education for children with cleft lip and palate. This project demonstrates the importance of parent and speech language pathologists understanding on the impact of cleft lip and palate on speech and feeding development through more accessible education methods.


A Second Annual Series of Webinars to Assist with Transition Planning for Youth/Young Adults with Intellectual, Developmental, and Learning Disabilities

Presenter(s)

Ida Barresi, Speech-Language Pathologist, Rose F. Kennedy Center, UCEDD/LEND

Transition planning is integral for post-secondary planning for youth/young adults with intellectual, developmental, and learning disabilities. The second annual 2021 series will address topics including making informed decisions regarding medical issues/medical transition to adult services; special needs planning, guardianship, and supported decision making; and Office for Persons with Developmental Disabilities (OPWDD) eligibility and self-direction. This presentation will be relevant to most disciplines, families, and self-advocates.


Children's Mental Health Champion Professional Learning Community: Breaking Silos Through Narrative Advocacy

Presenter(s)

Jennifer Maeverde, MA, RA: Infant and Early Childhood Mental Health, University of Maine Center for Community Inclusion and Disability Studies

With the support from AUCD and the CDC Children's Mental Health Champion grant, a statewide early childhood professional learning community (PLC) was formed in Maine with a focus on the intersection of disability, equity and mental health. Fifteen state and community agencies and organizations participated in the PLC over the course of the 20/21 year. This presentation discusses lessons learned, "ah-ha" moments of participants and next steps.


Cooking Matters Impact on Behavior for Participants with Intellectual and/or Developmental Disabilities

Presenter(s)

Amillia Oswalt, Ed.S, LEND Trainee, Partners for Inclusive Communities, UCEDD/LEND

Analyzed behavior change data of pre/post tests for Cooking Matters disability addenda participants to determine impact. Did participant behavior change following participation in Cooking Matters. Impact and lessons learned are reviewed.


Analysis of Cultural Variables on Services to Immigrant Families with Children with Autism

Presenter(s)

Hazel Goh, , LoneStar, LEND

This presentation highlights difficulties of immigrant families who have children with autism while living in the United States. Outcomes from semi-structured interviews with parents suggest barriers during the diagnosis process, difficulties in searching and accessing services, as well as struggles that immigrant families face while receiving services for their children with autism. We report the families� perspectives on a variety of issues with respect to culture and disability.


Connecting Employment Research with the Perspectives of Stakeholders to Develop an Innovative Intervention for Leading Youth with Disabilities to Work.

Presenter(s)

Michele Schutz, M.Ed., Doctoral Candidate, Vanderbilt University, UCEDD/LEND

What does it take to connect youth with severe disabilities to paid employment? How does paid work impact their postschool outcomes? In this presentation, we will describe a new intervention for connecting youth with severe disabilities to paid jobs during their final year of high school and discuss findings thus far from our work supporting educators to implement this intervention with students as part of a randomized control trial.


Addressing the Dissemination Gap: Findings from the Tennessee Disability Services Study

Presenter(s)

Erik Carter, Ph.D. , Professor, Vanderbilt University, UCEDD/LEND

What are priorities of people with disabilities and their families? How do they find the information and services they need to experience these outcomes? What would it take to ensure individuals, families, and professionals can more easily connect to needed resources? We will offer new insights into these questions based on our Tennessee Disability Services Study involving 3,000 diverse stakeholders. Learn how to improve information dissemination statewide.


The Whole Community Transition Planning Project: Collaborative Efforts toward the Development of an Innovative Community-based Transition Model

Presenter(s)

Ben Schwartzman, Ph.D., Senior Research Associate, Vanderbilt University, UCEDD/LEND

Through a one year community-based partnership planning grant awarded to the Vanderbilt Kennedy Center by the Administration for Community Living, our team engaged with over 300 stakeholders through a variety of methods. These methods included virtual community conversations, facilitated discussions with existing state-level coalitions and local organizations, focus groups with different stakeholder groups, and individual interviews.


Introducing the Consider Assistive Technology (CAT) Tool

Presenter(s)

Kim Singleton, MS, CCC-SLP, Senior Director of Assistive Tech, Institute on Disabilities, UCEDD

We know that assistive technology (AT) can provide solutions for people with disabilities, and people are more likely to use AT when they get to decide what to use. But we know with rapid changes in technology, understanding potential AT solutions can be a daunting challenge. So, we developed the CAT Tool. Potential AT users and the people who support them would benefit from this session.


Building Futures Together: A Training Program for Paraprofessionals Working with Children and Youth Impacted by Substance Use Disorders

Presenter(s)

Macey Muller, MA Psychology, Project Coordinator, Institute on Disability, UCEDD

Building Futures Together is a multi-level training program designed to prepare paraprofessionals in healthcare and school settings to provide specialized enhanced care coordination to youth whose parents are impacted by substance misuse. This presentation will describe both levels of training: 1) detailed content of the didactic instruction, and 2) competencies applied to on-the-job apprenticeships following U.S. Department of Labor guidelines. The presenters will also discuss the program partnerships.


PAY Check: Post-Secondary Services to Support the Transition of Students to Community Life and Career: A Follow-Up Study

Presenter(s)

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

PAY Check is a partnership between the LSU Human Development Center: a UCEDD, state VR, LEAs, a Community College, and local employers. PAY Check prepares transition-age students for their independent adult life in the community with post-secondary education, work-based high school diplomas, self-determination training, and paid apprenticeships. Presenters will share initial results of a follow-up study exploring the impact of services on program participants one to four years post-completion.


Virtual Mindfulness Programming at No Cost for Parents, Caregivers, and Educators

Presenter(s)

Jennifer Ward, MS, , Strong Center for Developmental Disabilities, UCEDD/LEND

The Strong Center for Developmental Disabilities partnered with two consultants to run a variety of mindfulness programs for parents/caregivers and educators at no cost. Programs included 2 Mindfulness Webinars, a 3-part Mindfulness Course designed for parents/caregivers and their children, an evening refresher night for parents/caregivers who have taken part in past programs, and a workshop offered to a school district to provide school staff with Mindfulness education.


Your Dream, Your Team: Combining Best Practices and Real-World Resources to Create Career Pathways for People with Disabilities

Presenter(s)

Mary McLaughlin, Disability Resource Coordinator, Tompkins Workforce New York

How one systems change project created and promoted an accessible tool that offers access to reliable, consistent, evidence-based resources and strategies to participate in person-centered planning meetings led by youth and adults with disabilities. Includes where and how research was embedded, including in resources for people with disabilities and caregivers. Focuses on the advancement of practices that improve lives and modeling inclusion; elements relate to sharing knowledge.


Using Video Modeling to Teach Employment Skills to Students with Intellectual Disabilities in a Post-Secondary College Program: A Research Study

Presenter(s)

Karen Feathers, Ed.D. in Educational Leadership with SPED, Assistant Professor of Special Education, Longwood University

Longwood LIFE is a post-secondary college program for students with intellectual disabilities with the end goal to prepare students in transition for employment in their home communities with supports and scaffolding as needed. Video modeling in a research study was used to train students in performing job tasks in a job skills lab for performing tasks in campus job placements with prompting from job coaches who are university students.


Impact of the Pandemic on the Behavioral Health of People with Intellectual and Developmental Disabilities (IDD)

Presenter(s)

Rachel Sturley, , JFK Partners/University of Colorado Health Sciences Center, UCEDD/LEND

We conducted a national survey about the mental wellbeing, and changes in mental health, of individuals with intellectual and developmental disabilities (IDD) during the pandemic. Results of the survey demonstrate worsened mental health, as well as more acute behavioral problems, difficulty sleeping, and weight gain. This decline correlates with loss of services and activities, demonstrating the importance of consistent funding and service delivery for people with IDD.


The Georgia Transition Partnership

Presenter(s)

Zolinda Stoneman, Ph.D., Director, Institute on Human Development and Disability, UCEDD

College graduates with autism too often are unemployed or underemployed in jobs unrelated to their college preparation. The College Transition Partnership, convened by the two Georgia UCEDDs and comprised of current/former college students with autism, advocates, providers, and agency personnel, developed a plan for a transition pilot, building on the work of the Emory University Autism Center, to support graduates with ASD to secure their desired futures. All disciplines.


The Human Development Institute's Undergraduate Certificate in Universal Design Program

Presenter(s)

Walt Bower, PhD, Preservice Training Coordinator, Interdisciplinary Human Development Institute, UCEDD/LEND

This session is an overview of the Human Development Institute's (HDI) Undergraduate Certificate in Universal Design program. The session will include the program's history and interdisciplinary structure, the curriculum, the recruitment of students, and the involvement of partnerships. Additionally, two current trainees will share their experience in the Universal Design program as well as how they have leveraged their training in their work at HDI.


Hear Our Voices - Empowerment, Inclusion, and Self-determination: Innovation in Self-advocacy programming at WIHD

Presenter(s)

Mariela Adams, MS, Former Trainee - Family Specialist, Westchester Institute for Human Development, UCEDD/LEND

Self-advocates are the biggest asset to our organization. We will highlight innovative and leverageable new programming under the Hear Our Voices Network at the Westchester Institute for Human Development. Our whole person model focuses on empowerment, education, social engagement but most importantly, it incorporates the voice and leadership of our self-advocates. The self-advocates not only teach us how to support them but also teach the community how to engage them.


A public-private partnership: Fostering collaboration to improve eligibility determination for developmental disability services in Maryland

Presenter(s)

Natasha Ludwig, PhD, Neuropsychologist/Family Member

The presenters in this session will describe the development of a public-private partnership between the Maryland Developmental Disabilities Administration (DDA) and Kennedy Krieger Institute (i.e., the Maryland Center for Developmental Disabilities and the Department of Neuropsychology) to improve the eligibility review process for DDA services and supports for Marylanders. This session is appropriate for social workers, psychologists, and attorneys, and those involved in eligibility determination for state funded disabilities services.


Barriers and Thoroughfares: The Lived Experiences of Families Living with Individuals with Disabilities

Presenter(s)

Kimberly Crowley, M.Ed., Nevada Lend Alumnus, Nevada Center for Excellence in Disabilities, UCEDD/LEND

Our presentation shares original qualitative research exploring the barriers and thoroughfares (facilitators) for families living with individuals with disabilities. Our session shares authentic voices highlighting the factors that inhibited or facilitated access to services as well as those factors that supported or negatively impacted quality of life for our families.


Mindfulness Amid COVID-19 for Children with Special Healthcare Needs

Presenter(s)

Hannah Layman, MPH, BS, Mindfulness Amid COVID-19 for Children with Specia, Center for Excellence in Disabilities, UCEDD/LEND

Mindfulness Minutes was a program designed to mitigate feelings of stress and worry as well as build positive coping skills for children with special healthcare needs. This virtual experience covered topics such as managing stress, focusing thoughts, and relaxing the mind and body. This mindfulness program was successful in addressing select behaviors and concerns in the short-term and was feasible for families. Disciplines: Public Health, Psychology, Social and Behavioral Sciences, Sociology


"Mapping the Trajectory: Involving Families in Professional Development"

Presenter(s)

ECPC Gundler, MA, Associate Director, ECPC, A. J. Pappanikou Center for Developmental Disabilities, UCEDD/LEND

This presentation will introduce the step-by-step manual developed by the Early Childhood Personnel Center (ECPC). The purpose of the manual is to support family engagement in state-level professional development.


Families of Young Children with Disabilities: Health Equity, Organizational Health Literacy, and Collaborative Assessment and Improvement [16 words]

Presenter(s)

Lindsay Rosenfeld, ScD, ScM, Scientist, Instructor, Institute for Community Inclusion/Boston Children's Hospital, UCEDD/LEND

We will explore health equity, organizational health literacy, and family engagement as crucial for creating equitable experiences for families with young kids with disabilities. Our assessment used publicly-available tools and interviews with staff, patients, and key informants to drive improvement processes. This cross-disciplinary session is relevant to clinicians, direct service providers, teachers, self-advocates, families, and anyone who thinks about how people and systems interact for equitable, optimal outcomes.


Evaluating the feasibility for community partners to implement an adapted physical activity toolkit for individuals with disabilities

Presenter(s)

Lesley Cottrell, PhD, Professor, Center for Excellence in Disabilities, UCEDD/LEND

This proposal will focus on a demonstration project that was initiated in April, 2020. The purpose of the project was to develop documents that would assist individuals within the community who would facilitate the adapted physical activity toolkit. Facilitators conducted individual, small group, and large group sessions in various settings (e.g., group homes, recreation facilities, individual homes) throughout the state. We will review the feasibility of this approach.


The Power of Your Story - How Digital Storytelling Amplifies the Voices of People with Disabilities

Presenter(s)

Patti Singleton, MS, Division Director, Interdisciplinary Human Development Institute, UCEDD/LEND

More and more, people are sharing their stories through channels such as social media and self-recorded videos Stories are accessible� Storytelling is a universal language� We learn from the experiences of others Stories remind us of the importance of listening Stories can bring issues to policy makers and the public


Updating First Responder Materials and Trainings to Prevent Escalation Events

Presenter(s)

Lesley Cottrell, PhD, Professor, Center for Excellence in Disabilities, UCEDD/LEND

This proposal will focus on community and UCEDD collaborative efforts to update existing materials (e.g., visor card), incorporated needed information (e.g., communication board), and outline training opportunities for First Responders in a rural state. These efforts were expanded to a statewide scale and moving into the university efforts to avoid escalation events, particularly where they might include individuals with disabilities.


The Family Empowerment Scale: A systematic review of its psychometric properties

Presenter(s)

Fiorella Yvette Guerrero Calle, MA, , University of Florida

This poster reports a systematic review of the Family Empowerment Scale (FES), a measure of caregivers' empowerment at three levels: family, services, and community. The FES has been used by interdisciplinary researchers in more than 150 studies. We present information about the measure, its psychometric properties, and describe the populations for which psychometric evidence is established. Systematic review guidelines were used to conduct the review (i.e., PRISMA and COSMIN).


Apps That Support Independence

Presenter(s)

Maegen Miller, , Rhode Island, LEND

A presentation on the benefits of phone apps to help individuals with disabilities gain more independence in their daily lives. Relevant to everyone but especially anyone who supports individuals with disabilities or special needs, or who have disabilities and/or special needs themselves.


Peer-mentored healthy lifestyle programming for young adults with disabilities: A reflective panel discussion of current programs and next steps

Presenter(s)

Bridgette Schram, MS, LEND trainee, PhD Student & Research Assistant, Center for Leadership in Disability at Georgia State University, UCEDD/LEND

This panel presentation will discuss health and wellness programs for young adults with disabilities, including 1) an overview of programs in current research literature, 2) a panel discussion of three existing programs at different stages of implementation, and 3) reflections on areas for growth. Through critical program evaluation, we seek to identify the extent to which our programs� peer-mentorship structure effectively supports healthy lifestyles at individual and environmental levels.


Understanding Data Accessibility for People with Intellectual and Developmental Disabilities

Presenter(s)

Keke Wu, Ph.D. Student, Miss, University of Colorado Boulder

This work explores how to make data visualization cognitively accessible to people with intellectual and developmental disabilities. We identified three visual elements, conducted a mixed method experiment with 34 participants, and developed four accessible visualization design guidelines. We initiated the conversation about data accessibility for people with cognitive disabilities, and discovered potential solutions to inclusive visual data analytics in hopes of supporting their self-advocacy and using data-driven decision making.


A Different Way of Thinking

Presenter(s)

Cody Clark, B.S. Marketing, Theatre Arts minor, Professional Magician/Autistic Self-Advocate, Interdisciplinary Human Development Institute, UCEDD/LEND

Magician/autistic self-advocate Cody Clark combines magic, comedy, and storytelling to share what living with autism is like. Starting with his initial diagnosis and ending with his college graduation, Cody places his magic routines inside common life experiences to show how his autism makes him different, yet similar to most people. He'll also share how his talks help AUCD member institutions successfully transition disabled incoming freshman into campus


In Their Own Voices: The Lived Experience of Autistic Women

Presenter(s)

Elisheva H Levin, PhD, Post-Doctoral Fellow/Self-Advocate, Center for Development & Disability, UCEDD/LEND

Women on the autism spectrum are often misdiagnosed, diagnosed later, or not diagnosed at all. Their different strengths and needs are not well understood. We provide a short introduction detailing related research and feature a space for each autistic woman to provide a summary of her lived experience and what she wants others to know about women with autism. The poster may interest self-advocates, advocates, individuals with disabilities, and professionals.


Health Equity for Children with Special Health Care Needs: a snapshot from the 2018-2019 National Survey of Children�s Health

Presenter(s)

Heidi Fredine, MPH, Lead researcher, Center for Development & Disability, UCEDD/LEND

This poster describes the impact on access to healthcare for Children with Special Health Care Needs (CSHCNs); identifies disparities in socio-demographics and key health indicators for CSHCNs; and compares select health outcomes for CSHCNs and non-CSHCNs.


Adaptations for More Accessible Psychotherapy: Applying the Self-Determined Learning Model of Instruction to Cognitive Behavior Therapy

Presenter(s)

Jessica Schuttler, PhD, Assistant Professor, Schiefelbusch Institute for Life Span Studies, UCEDD/LEND

We will share information from current research about making adaptations to cognitive-behavior therapy (CBT) to make it more cognitively accessible, especially for people with intellectual and developmental disabilities. Presenters will also share a brief overview of the Self-Determined Learning Model of Instruction, and discuss ideas about how to apply the Self-Determined Learning Model of Instruction to a context like psychotherapy. Relevant disciplines include mental health clinicians, researchers, and advocates.


Care Coordination: Best Practices, Person- and Family-Centered Care, and the Importance of Lived Experience

Presenter(s)

Emily Costello, Project Assistant, Munroe-Meyer Institute of Genetics & Rehabilitation, UCEDD/LEND

Often, families of children with disabilities experience difficulty navigating health and service systems. The role of a Care Coordinator is designed to mitigate some of these difficulties. The Nebraska UCEDD worked with the state Title V program to define Care Coordination and Family-Centered Care, focusing on viewpoints of families and recognizing the importance of lived experience and mentorship. Learn about these key elements of Care Coordination and best practices.


COVID-19 Related Stressors and Coping Behaviors of Providers Working in the Disability Field

Presenter(s)

Jenean Castillo, Ph.D., LEND Program Director, Westchester Institute for Human Development, UCEDD/LEND

COVID-19 is a Public Health Emergency which has had a significant impact on many, if not, all people. Those working on the front lines have been particularly impacted. This poster highlights the stressors and coping behaviors reported by direct service providers working with individuals with disabilities during COVID-19 to inform best supportive practices.


Integrating patient and family lived-experiences into research and practice: Pediatric cancer as a developmental disability

Presenter(s)

Kimberly Milla, M.S., Research Assistant II, Kennedy Krieger Institute, UCEDD/LEND

Completion of cancer treatment is seen as a milestone ending a tumultuous time in a child/adolescent?s life; however, survivors often live with lifelong impacts from the disease and treatment. These impacts create challenges including developmental, neurocognitive, sensory, and/or physical disabilities, but providers across disciplines often overlook post-treatment impacts, leading to survivors missing out on important resources that would allow them to function to their greatest potential.


Learning Together to Infuse Lived Experience into Autism Acceptance Month: A Case Study

Presenter(s)

Maura Leahy, MPH, Program Manager, The Association of Maternal and Child Health Programs (AMCHP)

This session will share reflections from the State Public Health Autism Resource Center (SPHARC) Autism Acceptance Month 2021 activities that bridged the gap between research and lived experience as well as lessons learned around increasing accessibility. This session is relevant for attendees that work with individuals/organizations that could do a better job of elevating and prioritizing lived experience and accessibility and will share actionable strategies to do so.


Exploring Readability of the myODP.org website

Presenter(s)

Jenifer Taylor Eaton, M.Ed., Lead Research Associate, Institute on Disabilities, UCEDD

This research explores the readability of Pennsylvania�s Office of Developmental Programs (ODP) website. ODP provides resources for people with disabilities. To be accessible, the website should be written at a reading level that can be read by anyone. I used the Flesch-Kincaid scale to determine the reading level of several resource pages on the ODP website. I will discuss findings and implications for accessibility.


L.I.V.E from your virtual platform! How to engage every audience in your inclusive virtual event and program

Presenter(s)

Lindsey Mullis, MS. PHD ABD, Inclusive Health & Wellness Director , Interdisciplinary Human Development Institute, UCEDD/LEND

This presentation will explain how to create the broadest accessible and engaging virtual programs for any audience. The Game of L.I.V.E: Live Inclusive Virtual Events & Programs is a comprehensive virtual accessibility resource that provides concise information on how to create a maximally inclusive and accessible virtual program in an easy-to-follow gameboard format.


Perspectives on Mental Health Treatment from Adults with Intellectual Disabilities and their Clinicians

Presenter(s)

Andrea Witwer, PhD, Director of Training, The Nisonger Center, UCEDD/LEND

This session will present the perspective of mental health (MH) treatment from a national sample of adults with intellectual disability and MH providers. We will discuss how focus groups provide a sound research method through which to hear the voices of those with lived experience. We will then provide information on the theme and subthemes that emerged in focus groups with adults with ID and MH clinicians.


COVID-19 and its effects on healthcare for people with disabilities and their caregivers

Presenter(s)

Michelle Barth, MA, Ms., Wyoming Institute for Disabilities, UCEDD

The COVID-19 pandemic forced patients to start using or increase their use of telehealth. We conducted a survey to explore the use of and experiences with healthcare by people with disabilities and their caregivers during the pandemic. Disabled individuals and their caregivers were more likely to delay or cancel appointments than non-disabled individuals, among other differences. The results demonstrate that individuals with disabilities were disproportionately impacted by the pandemic.


Developing and adapting an art therapy mask creation intervention for individuals with traumatic brain injury across clinical and non-clinical settings

Presenter(s)

Stephen Heck, M.Res., M.A., , Center for Excellence in Disabilities, UCEDD/LEND

This proposal focuses on adapting a military evidence-based art therapy activity for people with traumatic brain injuries (TBI) for use in civilian settings by developing a toolkit. The toolkit provides materials for a person with a TBI, caregiver, professionals, and implementation methods for clinics, home use, support groups, and TBI programs. These efforts are to expand access to an intervention that improves the quality of life for people with TBIs.


Leading With Lived Experience: Co-Creation of Curriculum for HR Professionals

Presenter(s)

Luticha Doucette, , Strong Center for Developmental Disabilities, UCEDD/LEND

Participants will learn about a unique collaboration between those with lived experiences in response to a grant from the New York State Developmental Disabilities Planning Council to develop a curriculum to address ableism within employment for those obtaining an undergraduate degree or Masters degree in Human Resources or Business Management.


K-12 to College: The Transition for Children with ASD

Presenter(s)

Kelsey Davis, , Center for Disability Resources, UCEDD/LEND

For many students, transitioning to college is difficult. We agree that incoming college students often feel anxious and unprepared for the K-12 to college transition. The transition can be especially difficult for students on the autism spectrum where routines are valuable, social situations may cause anxiety and independence is important. We hope to share valuable information about ways to make this transition easier, especially for those with autism spectrum disorders.


A Community Needs Assessment Survey of Medical Needs for Adults with Intellectual Disabilities, Developmental Disabilities and/or Complex Medical Conditions

Presenter(s)

Sahana Shankar, BS, MD Student, Mailman Center for Child Development, UCEDD/LEND

People with intellectual disabilities, developmental disabilities and/or complex medical conditions are often unable to find adult providers that meet their medical needs. We conducted a needs assessment survey to understand the needs of our patient community. We used the results to inform the creation of a medical home for adults with intellectual disabilities, developmental disabilities, and/or complex medical conditions that best serves their needs.


Integrating disability content into public health and health care education programs: Another opportunity to address issues of equity and power

Presenter(s)

Tara Lutz, PhD, MPH, MCHES, , A. J. Pappanikou Center for Developmental Disabilities, UCEDD/LEND

Approximately 25% of adults have a disability, yet disability is often not included in public health and healthcare education. Using a health equity framework that integrates disability emphasizes inclusivity, respect, and dignity; encourages consideration of multiple/intersecting identities; and can reduce health disparities. This presentation will highlight several examples of how to include disability in equity-based pedagogy across undergraduate, graduate, and medical school curricula. Strategies and resources will be shared.


Interventions in Healthcare Inequity: Guidelines for Addressing Bias Against People with ID/DD

Presenter(s)

Leah Smith, MPA, Project Coordinator, University of Cincinnati UCE, UCEDD/LEND

This focuses on anti-discrimination guidelines challenging healthcare inequities experienced by people with disabilities that have been developed by the Center for Dignity in Healthcare for People with Disabilities (CDHPD). These guidelines can be used by physicians and policy makers to mitigate biases against people with disabilities in the areas of: mental health/suicide prevention, organ transplantation, aging/end of life care, and prenatal diagnosis.


Evaluation for measurement bias towards youth with disabilities in a positive well-being surveillance index

Presenter(s)

Samantha Ross, Ph.D, Assitant Professor, Center for Excellence in Disabilities, UCEDD/LEND

Positive child well-being indices monitor children�s assets and behaviors (e.g. participation on sports teams). Current national indices penalize for a disability diagnosis, making the implicit assumption youth with disabilities cannot achieve optimal well-being. Our analysis evaluated the validity and potential measurement bias of a positive child well-being index drawn from the National Survey of Children�s Health. We share our findings and recommendations for development of inclusive well-being indices.


Northeast Regional LEND programs connect to Native American Tribal communities: AUCD GOAL Project

Presenter(s)

David Helm, PhD, LEND Director, Institute for Community Inclusion/Boston Children's Hospital, UCEDD/LEND

The North East Regional LEND Consortium working with the Institute for New England Native American Studies is facilitating connections with LEND program expertise and Native Tribal communities' expressed needs to better understand the children in their communities who are autistic or have intellectual/developmental disabilities. Cultural issues and perceptions play a key role in understanding family and school communication, family needs and priorities, and system responses to those priorities.


Let�s Talk: Discussions to foster improved staff morale, patient connections, and a more inclusive atmosphere.

Presenter(s)

Diana Rodriguez, LMSW, Social Worker, Rose F. Kennedy Center, UCEDD/LEND

In lieu of the ever-increasing tension in the United States of America, we initiated open discussions in the work place. Discussions relate to navigating the various issues and the impact they have on patients, patient care, and staff at a university-affiliated urban developmental center for individuals with developmental disabilities.


Special Olympics Programming in a Virtual World

Presenter(s)

Lauren Jones, M.A., Ms., University of Cincinnati UCE, UCEDD/LEND

This project involved developing accessible virtual workouts and social opportunities for the athletes at Special Olympics in order to keep athletes healthy, active, and connected. This poster would be relevant to anyone in physical therapy or any discipline that works with community organizations.


Community Voices Informing Evidence-Based Policy: COVID-19 and People with Developmental Disability in the Greater Washington D.C. Area

Presenter(s)

Kimberly Bullock, M.D., Associate Professor, Georgetown School of Medicine, Georgetown University Center for Child & Human Development, UCEDD/LEND

This original research highlights the perspectives of both individuals with IDD as well as caregivers and healthcare professionals during the COVID-19 pandemic to evaluate the ability of these specialists to effectively and equitably meet the needs of those within the IDD community in the COVID-19 pandemic. The extracted strengths and weaknesses of the care continuum for individuals within the IDD community will be utilized to promote preparedness for crisis scenarios.


Examining the Prevalence of Overweight and Obesity among Latino Children and Youth with IDD

Presenter(s)

Sandra Vanegas, PhD, Assistant Professor, Texas Center for Disability Studies, UCEDD/LEND

Overweight and obesity are rising health and wellness concerns for children/youth with intellectual/developmental disabilities (I/DD). Unfortunately, much of this work has not focused on Latino children/youth with IDD. This study examines overweight and obesity among Latino children/youth with IDD within a national survey. Outcomes will inform on the promotion of health and wellness of Latino children/youth with IDD across disciplines (e.g., occupational therapy, public health, psychology, and social work).


Impact of COVID on Individuals with Disabilities: A Mixed-Method Study Driven by Voices of People with Disabilities

Presenter(s)

Kathy Sheppard-Jones, , Interdisciplinary Human Development Institute, UCEDD/LEND

We present the results of an online survey of individuals with disabilities near the height of the first surge of the COVID-19 pandemic. For 990 participants, we examined their perceived quality of life, stressors, coping and resilience skills, knowledge of health care rights, compliance with social distancing guidance, and use of technology during the pandemic. We present our most salient findings and the implications for the disability community.


A conversation about self-direction featuring "Self-Direction: A Revolution in Human Services"

Presenter(s)

Jamie Ray-Leonetti, JD, Associate Director of Policy, Institute on Disabilities at Temple University

Self-direction provides participants with greater choice and control over their publicly funded services and supports. Benefits include increased access, greater satisfaction and quality of life, and reduced caregiver stress. This session will present the history, present, and future of self-direction. Pennsylvania�s participant-directed services model will be highlighted, including outreach and education by Pennsylvania�s UCEDD. Presenters will discuss implications for Disabilities Studies curricula, professional preparation, and self-advocacy.


COVID-19 Mortality Rates for Persons with Intellectual and Developmental Disabilities

Presenter(s)

Kathryn Burke, PhD, Assistant Research Professor, Institute on Disabilities, UCEDD

In this poster presentation, we share research findings from a multi-state analysis on COVID-19 infection and mortality rates for people with intellectual and developmental disabilities (IDD) and the general population. The most recent data available suggest people with IDD are less likely to be infected with COVID-19, but over twice as likely to die from infection, compared to the general population. Recommendations for research and practice are provided.


Virtual Disability Advocacy Training in Medical and Healthcare Curriculums: Exploring Attitude Change among Medical, Physician Assistant, and Dental Hygienist Students

Presenter(s)

Kaitlin Stober, MS, Visiting Senior Research Specialist, Institute on Disability & Human Development, UCEDD/LEND

This project describes a series of virtual, disability advocacy trainings that were embedded within Medical, Physician Assistant, and Dental Hygienist curriculums at three different midwestern universities and colleges. The positive impact of these trainings on student attitudes towards the intellectual and/or developmental disability community (I/DD) is presented and implications for future directions are discussed.


Co-Occurring Mental Health Conditions and Developmental Disabilities: Lived Experience to Train Professionals and Communities

Presenter(s)

Kristen Dahl, CHES LPCC, Program Manager, Interdisciplinary Human Development Institute, UCEDD/LEND

Mental health treatment for underserved populations can be advanced by creating a diverse, culturally responsive network of mental health and medical professionals. The Mental Health and Developmental Disabilities National Training Center promotes resources that address how to effectively serve individuals with mental health conditions and developmental disabilities through person-centered practices, universal design, and reasonable accommodations. Central to this work is engaging the voice of people lived experience as experts.


The Impact of Peer-to-Peer Mentoring on Participant Direction: Successes, Challenges, and Looking Ahead

Presenter(s)

Jamie Ray-Leonetti, JD, Associate Director of Policy, Institute on Disabilities at Temple University

Self-Direction allows people with disabilities to live the lives they choose. This poster will address 1. What is participant direction? 2. How does peer mentoring and story sharing impact participant direction? 3. What can we learn from the lived experience of those who are self-directing about successes and challenges? 4. How can �Lives in Progress� connect, support and inform people who self-direct?


Neurodiverse Health Care: Family and Providers as Partners

Presenter(s)

Sarah Laughlin, PhD, Assistant Professor, Clinical Neuropsychologist, LEND Center of Pittsburgh, LEND

We present an example of family leadership in collaboration with healthcare professionals to create a more autism-friendly experience occurring within our regional children's hospital, UPMC Children's Hospital of Pittsburgh (CHP). Directing these efforts, a committee of family and healthcare leaders is working together to identify areas for quality-of-care improvement, determine solutions, and implement change. We present a subset of committee initiatives intended to promote "autism accessible healthcare".


Promoting Employment Outcomes through Community Partnerships, Training and Research: The Colorado Office of Employment First and JFK Partners LEND Program

Presenter(s)

Teresa Nguyen, MPH, Curriculum Developer/ Trainer, JFK Partners/University of Colorado Health Sciences Center, UCEDD/LEND

This presentation will provide attendees with a foundational knowledge of how to create an inclusive workplace for neurodiverse individuals as well as advocate for occupational therapy�s role in promoting positive employment outcomes for individuals with Autism Spectrum Disorders. Attendees will also understand how this research has created a unique partnership between the Colorado Office of Employment First and the state�s JFK Partners LEND Program to move forward Employment First efforts.


A Healthcare Provider's Introduction to Disability: A Pre-Clinical Medical School Curriculum

Presenter(s)

Sahana Shankar, BS, MD Student, Mailman Center for Child Development, UCEDD/LEND

In an effort to address the knowledge gap faced by many physicians, we created a pre-clinical medical school curriculum on caring for PWD. Our presentation describes the learning objectives for the curriculum as well as our structure and approach. The main themes of the curriculum include implicit bias, the medical vs. social model of disability, disability culture and history, health disparities in PWD, and delivering unexpected news involving disability diagnosis.


Enabling access to computers by those who find them inaccessible or to too complex.

Presenter(s)

Gregg Vanderheiden, Ph.D., Professor, Director, Trace R&D Center University of Maryland

Computers have become essential to all aspects of life, from education, to employment, to health and daily living. Yet they are too complex and inaccessible to many. The result is decreasing opportunities for many people with developmental disabilities. Our work has shed new light on some of the barriers and ways to address them. It also led to the development of open-source tools now free to make computers simpler.