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AUCD - Posters: Health, Wellness, Recreation & Related Issues

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Monday, December 7, 2020 12:00 PM - 4:45 PM

Location: Virtual


Health and Wellness Class for Young Adults with Intellectual and Developmental Disabilities


Michelle Donahue, Doctor of Physical Therapy, , Strong Center for Developmental Disabilities, UCEDD/LEND

This poster summarizes a Health and Wellness class for students in [email protected], higher education transitional program for young adults with developmental disabilities. Run by graduate physical therapy students, this class addresses the difficulty of individuals with developmental disabilities finding appropriate health and wellness programs and learning how to exercise independently in their communities. This program aligns with the inclusive framework of [email protected] and the campus community.

Spiritual Direction to Individuals with Intellectual Disability and/or Autism Spectrum Disorder


Steven Koch, PhD, Associate Professor in Clinical Pediatrics, Riley Child Development Center - Indiana University, LEND

This presentation will present results from a survey of spiritual directors nationally on their experiences providing spiritual direction to individuals with Intellectual Disability and/or Autism Spectrum Disorder. Spiritual direction is the practice of companioning with someone as he/she strives to deepen his/her relationship with the divine. The goal of this survey was to identify the joys and the challenges of providing direction to individuals with neurodevelopmental disabilities.

Smoothing Health Care Transition: Practices Among Adult Health Care Providers


Katherine Traino, B.S., , Center for Learning and Leadership, UCEDD/LEND

We will present what we learned from a survey of adult health care providers about current practices, barriers, and areas for education surrounding receiving patients with neurodevelopmental diagnoses from pediatric care. These findings will inform recommendations for policy-related improvements in adult medical settings and continuing education. Relevant Disciplines: self-advocate; family; provider; policy

Analysis of Medical, Psychology, Educational, Social, and Vocational Data Available from the Children's Hospital New Orleans Late Effects Clinic Database


Matthew Prendergast, MS, 2nd Year LEND Trainee, Louisiana State University Human Development Center - New Orleans, UCEDD/LEND

Cancer therapy at an early age can produce complications that may not become apparent until years later. These complications are known as late effects. Presented is a research analysis which reviews data detailing both the medical and functional outcomes of pediatric cancer survivors and suggests a more optimal design for late effects clinics.

Spiritual Issues of Parents of Children with Disabilities


Katherine Walker, M.Div, , JFK Partners/University of Colorado Health Sciences Center, UCEDD/LEND

A survey was initiated in spring 2020 to understand the spiritual issues experienced by parents of children with disabilities. The issues that were surveyed included relationship to anxiety, isolation, spiritual distress, internal faith, and faith community. The results of this survey will be relevant to mental health and spiritual care professionals, as well as clinicians working with families at time of diagnosis.

Mindfulness-Based Stress Reduction: A tool to help reduce stress in parents of children with special needs


Adam Langenfeld, MD, PhD, , Institute on Community Integration, UCEDD/LEND

Parents of children with autism spectrum disorder (ASD) experience high levels of stress. We review evidence supporting mindfulness-based stress reduction (MBSR) techniques for managing stress and improving overall health among parents of children with special needs. Session participants are invited to try MBSR techniques. Gain a greater understanding of MBSR and how it can be integrated into the lives of parents and caregivers, educators, and healthcare practitioners.

Special Olympics Health Fair in SC: Forging New Collaborations and Expanding Outreach


Karlene Walker, MD, Developmental-Behavioral Pediatrics Fellow, Center for Disability Resources, UCEDD/LEND

In an effort to broaden the scope of athletes screened, Special Olympics South Carolina (SOSC) partnered with the Medical University of SC (MUSC) to host the first stand-alone SOSC health fair, which involved a multidisciplinary team of SOSC directors, MUSC physicians, social workers, students, and healthcare administrative staff. Successes and challenges from this pilot project will hopefully be used to guide SOSC health fairs in other cities.

Medicare Annual Wellness Health Risk Assessment in Adults with Intellectual and Developmental Disabilities


Jason Xenakis, MD, DrPH, , Westchester Institute for Human Development, UCEDD/LEND

This research evaluated the feasibility of the commonly used Medicare Health Risk Assessment to engage adults with intellectual and developmental disabilities at their primary care appointment. This research found that this risk assessment resulted in a greater breadth of screening for health, social, and safety issues leading to more appropriate follow-up. These findings are especially important for adults with IDD and anyone involved in their healthcare.

Dynamic wellness in times of crisis: Cultivating an accessible telehealth program to build community and foster self-care and connection.


Seema Jacob, PsyD, Assistant Professor, Center for Development & Disability, UCEDD/LEND

Explore how one UCEDD responded to a global pandemic by creating an online wellness community to combat stress, anxiety, isolation, and vulnerability resulting from physical distancing measures. Navigating uncharted ways of working from home without traditional means to access support, we created weekly activities rooted in mindfulness, movement, and artistic inspiration. This presentation applies to professionals who want to create and mobilize an inclusive wellness program grounded in evidence-based practices.

West Virginia Traumatic Brain Injury (TBI) Needs Assessment Survey


Miranda Talkington, LGSW/CBIS, TBI Program Manager, Center for Excellence in Disabilities, UCEDD/LEND

WV TBI Program conducted a needs assessment to survey the unmet needs, barriers to care and services for people with TBI, family members, and professionals who provide services to TBI clients living in WV. The survey focused on identifying the services that are needed in West Virginia for individuals with TBI. The results of the survey were compared among family members and professionals that work with people with TBIs.SW/OT/PT/SLP

Lost in Translation: An Assessment of Medical Education on Caring for Those with Developmental Disabilities


Emily Worley, , Schiefelbusch Institute for Life Span Studies, UCEDD/LEND

Despite recent advancements in health care education, those with developmental disabilities continue to experience disparities in health outcomes. This project was created in an effort to begin to diminish these discrepancies, by providing an assessment of the extent of medical training, or lack thereof, on care competencies necessary to adequately support those with developmental disabilities.

There are options: learn foundational knowledge to help you advocate for your comprehensive sexual and urogynecology healthcare needs


Anne Woodruff Jameson, PT, DPT, , Munroe-Meyer Institute of Genetics & Rehabilitation, UCEDD/LEND

People with I/DD often experience urinary/fecal incontinence and pain with pelvic exams or sexual activity and don't know that help is available to address these issues. This session, run by a pelvic floor physical therapist, will teach basic biomechanics of the muscles that affect these functions and what can be done to address problems. It is appropriate for people with I/DD, direct support providers, and healthcare providers.

Mental Health and Developmental Disabilities: Training Needs and Service Gaps


Roxann Lamar, MS, Research Professional, Center for Human Development, UCEDD/LEND

This poster describes the current state of inclusion of individuals with intellectual and developmental disabilities in community mental health services in the U.S. The Mental Health and Developmental Disabilities National Training Center conducted a national needs assessment. Respondents were individuals with lived experience and key informants with systems-level knowledge from 48 states. They provided guidance on improving current MH practices and systems to meet the needs of this population.

Special Olympics Strong Minds Initiative: Promoting health equity through teaching strategies for stress management and coping


Evon Lee, PhD, Associate Professor of Pediatrics, Vanderbilt University, UCEDD/LEND

Despite progress toward inclusion of individuals with intellectual and developmental disabilities (IDD), significant disparities exist in their access to physical and mental health services. This project describes the implementation of the Strong Minds initiative during the Special Olympics games in Tennessee starting in 2019 and the adaptation of the project to incorporate social distancing restrictions due to the COVID-19 pandemic in 2020.

A national pilot study of the knowledge, attitudes and behaviors of parents of children with disabilities in response to COVID-19


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

Families of children with disabilities are uniquely impacted by COVID-19. The CT UCEDD conducted a national pilot study of the knowledge, attitudes, and behaviors of parents of children with disabilities during COVID-19. Data from over 600 families indicated that among families' highest needs are access to special education, money, child care, and health. Results may be used to direct resources for families now and in future public health crises.

An Investigation of US Continuing Medical Education (CME) Requirements for Intellectual and/or Developmental Disabilities by State


Maureen Burns, MS, APRN, ACNP-BC, A. J. Pappanikou Center for Developmental Disabilities, UCEDD/LEND

The purpose of this project was to determine if any states require education post-graduation on evidence-based care for individuals with intellectual or developmental disabilities. A website- based review state medical board or legal CME regulations was conducted. Results indicated that there are no states which require post-graduation education units on the care of intellectual or developmental disabilities and represents an opportunity for the field to address this need.

Partnering with community organizations to identify, promote and improve accessible parks and trails


Brandy Sandersfeld, M.S., Program Manager, Partners for Inclusive Communities, UCEDD/LEND

The Arkansas Disability & Health Program has collaborated with several community groups, including Scouts BSA, the EAST initiative, and local city officials in order to identify, promote, and advocate for the accessibility of some of our state's most loved parks and trail systems. The hope is to increase access and information about accessible trails for people with disabilities, while also changing the overall attitudes of the community.

Compounded Impacts of Bullying and Weight on Physical Activity Among Children with Special Healthcare Needs


Meredith Williams, MPH, , University of Wisconsin-Milwaukee

CSHCN are disproportionately likely to be bullied, overweight/obese, and physically inactive. We used National Survey of Children's Health data to investigate the association between bullying and physical activity among CSHCN and test whether it differs by weight. Bullied CSHCN were at increased risk of physical inactivity--a risk that was compounded for overweight/obese CSHCN. Efforts to reduce physical activity disparities for CSHCN may benefit from placing greater focus on bullying.

Addressing Inequities and Injustice in Suicide Prevention for Youth with Disabilities


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

Suicide is an increasing cause of death for youth with disabilities, but prevention, screening, and treatment strategies are often inaccessible. The proposed interactive session will use a breakout group format to discuss approaches developed with and for youth with disabilities. Attendees will practice using nonverbal screening tools and hear from self-advocates who have had both positive and negative experiences seeking mental health treatment.

Caregivers of Individuals with Rubinstein-Taybi Syndrome (RTS): Perspectives, Experiences and Relationships with Healthcare Professionals


Ilka Riddle, PhD, Director, University of Cincinnati UCE, UCEDD/LEND

The purpose of our study was to explore the healthcare experiences of family caregivers of children and adults with Rubinstein-Taybi syndrome (RTS) to understand the issues they encounter when working with medical professionals and to examine their perspectives on how to improve family-centered-care. We will present methodology, findings and recommendations of our study during this session.

Promoting Inclusive Recreation by Building an Inclusive Health Coalition: A Case Study of Girls on the Run


Anne Crotty, MPH, Program Coordinator, Center for Disabilities and Development, UCEDD/LEND

The Iowa UCEDD is collaborating with partners to pilot test a community implementation process for an inclusive Girls on the Run program. This includes building a diverse Inclusive Health Coalition to conduct assessments that identify inclusion concerns within the community, identify solutions, customize to the local context, and gather community feedback. A staff member will share results and lessons learned from the coalition's first year.

Assessing the Needs of Persons with Intellectual and Developmental Disabilities and Direct Support Professionals in DC During the COVID-19 Pandemic


Caitlin Schille Jensen, MPH, Project Researcher , Georgetown University Center for Child & Human Development, UCEDD

People with intellectual and developmental disabilities (IDD) are more likely to contract COVID-19, and they have higher case-fatality rates than the rest of the population. The Georgetown UCEDD gathered information about how the pandemic is affecting individuals with IDD in DC and the direct support professionals who care for them. This mixed methods needs assessment will guide future research, training, technical assistance, policy advocacy, and systems change efforts.

Social Determinants: Expanding Access to Resources to Maximize Wellness and Self-Sufficiency in a Pandemic Afflicted Community


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

Social determinants of health represent the social and physical environmental factors that influence overall health. During the COVID-19, those who were without resources became considerably more vulnerable with isolation and service restrictions. In this session, review how we have addressed social determinants during the period of isolation and what can be done to prevent further deleterious effects if a second peak in COVID-19 were to return.

Creating a Ripple Effect of Inclusive Recreation in Iowa


Anne Crotty, MPH, Program Coordinator, Center for Disabilities and Development, UCEDD/LEND

Inclusive recreation means opportunities for people with disabilities to participate in recreation alongside peers without disabilities, with accommodations as needed. Iowa's UCEDD sponsored seven mini-grants to community-based organizations to promote inclusive and sustainable recreation programs. This poster will share the selected projects, adaptations due to Covid-19, and how each is creating a ripple effect of disability inclusion in their organization and community.