News

Orientation - August 23, 2024

We formally welcomed the 2024-2025 SC LEND trainees at Orientation on August 23, 2024 in Columbia, SC! Trainees had an opportunity to network with trainees and faculty across the state. While getting to know each other and the program, trainees got a start on their leadership training, heard from a panel of advocates in South Carolina and listened to self-advocate and family perspectives.

We are looking forward to another amazing LEND year!

SC LEND Leadership Conference - May 2, 2024

SC LEND Faculty and trainees gathered at the SC Archives building in Columbia, South Carolina on Thursday, May 2nd for the 2nd annual SC LEND Leadership Conference. Trainees presented oral presentations and participated in poster sessions to share their final LEND projects. SC LEND was able to recognize some projects, faculty and trainees that went above and beyond with awards. 

Congratulations to all of the trainees for another amazing year of SC LEND!

2023 - 2024 LEND Trainee Final Projects

The Use of Gait Kinematics and Electromyography Technology on Informed Goal Directed Therapy for a Child with Cerebral Palsy: Sonora Snook; Chloe Boroff; Katie Capps; Emma Scott; Cindy Dodds

Our project is a case studying analysis the effects of goal directed physical therapy care on gait kinematics on a child with cerebral palsy. We assess gait kinematics using EMG and motion capture systems and used this information to advise physical therapy care.

Overcoming Myths and Misinformation About Inclusive Postsecondary Education: Amanda Clinton; Michelle Macias, MD

Identifying some of the barriers and challenges regarding Inclusive Postsecondary Education programs and developing strategies to overcome them.

Personalized Health Record to Improve Family-Centered Care: Jackie Drinkwater; Carrie Cormack; Karen Irick

Personalized Health Record-About Me page for children with special healthcare needs. Consolidation of the most pertinent medical and personal information about the child with a neurodevelopmental disability. Strengthen connections between families and the healthcare team by personalizing care.

Career Opportunities in the Field of Developmental Disabilities: Jessica Kotik; Anne Kinsman, PhD

The goal of this project is to increase awareness of career opportunities for working with individuals with autism and other developmental disabilities.

IMPACT Model for Autism Diagnosis: Clay Seim; Laura Carpenter, PhD

IMPACT is an alternative model for diagnosing ASD. It allows a streamlined approach to be taken when diagnosing unambiguous cases of ASD.

Sleep, Play, Heal Program in the PICU at MUSC Shawn Jenkins Children’s Hospital:Grace Avin; Roxanna Bendixen

This doctoral capstone and LEND project will increase knowledge and understanding of the Sleep, Play, Heal program through the creation of educational resources, specifically for nurses, so the staff at MUSC Shawn Jenkins Children’s Hospital may reduce negative experiences and improve outcomes for PICU survivors and their families.

Beneficial Handout for Caregivers of NICU Babies: Jenna Wiggers ; Cynthia Dodds; Laura Carpenter

Creation of NICU educational materials for caregivers. Including benefits of kangaroo care and developmental milestones for infants 36-40 weeks.

Effects of Individualized Pediatric Wheelchairs on Functional Mobility and Participation in Ugandan Children with Disabilities: Meghan Andrews; Cynthia Dodds

A research study conducted in Uganda, Africa to examine the beneficial effects of wheelchair implementation on the socioemotional and mobility domains of Ugandan children with disabilities. Led by MUSC staff and PT students, starting in April 2022, a one-week wheelchair seating and mobility clinic is provided to adults and children in the community. My focus is on providing wheelchairs for the pediatric population.

Dental Handout for Families of Children, Adolescents, and Adults with Special Healthcare Needs: Hannah Miller; Bailey Duffy; Frances Gouldin; Michelle Macias

The purpose of this project was to provide helpful information for caregivers of children, adolescents, and adults with special healthcare needs (CYASHCN). This project explains how to take care of a child's teeth at home, how diet affects dental health, what dental problems may arise, how we can accommodate for CYASHCN in a dental office, and what resources are available to CYASHCN and their families. This project provides tips on how to help your loved one with their oral hygiene at home, what to expect at the dentist, and recourses to improve your access to dental care.

Establishing a Medical-Legal Partnership (MLP), a Pilot Study: Julia Garcia; Lenzee Newman; Karen van Bakergem, LISW-CP; Angela LaRosa MD

The Medical-Legal Partnership (MLP) pilot is an ongoing advocacy project within the South Carolina, Leadership Neurodevelopmental and Related Disabilities Program (LEND). The project is being conducted at the Medical University of South Carolina (MUSC) within the Developmental-Behavioral Pediatrics Department. An MLP is a healthcare delivery framework that embeds legal services into the healthcare team to help treat patients’ immediate social needs and deploy upstream strategies to address the social determinants of health. The project began with establishing a specific workflow and outlining the MLP’s goals, respective responsibilities, and establishing patient privacy protections.  Ongoing relationships with local legal providers were re-established and approximately 13 referrals have been placed with subsequent legal assignment and rendering of services. Various social determinants of health data are being collected. Much of the project has included working out the logistics of legal needs and defining the population that can be adequately served. The MLP project plans to be continued post LEND with the hopes of eventual upstream policy change and continued direct service to individuals and families who are in need.

My child has been diagnosed with autism… Now what? A webinar to identify services and supports available in South Carolina: Allie Megale, Ph.D.; Catherine Bradley, Ph.D.

The goal of this project was to assist with the development of a statewide webinar series for families receiving a first-time autism diagnosis. The webinar focused on helping families to identify resources in SC as well as inform families of current research studies. Feedback from participants was also collected to identify areas of improvement for future webinars.

Assessing Current Medical Student and Faculty Perception Around Education for Caring for Patients with Disabilities: Adriana Rush; Steven Ma, MD

The initial part of a multi-stage larger project to assess gaps in undergraduate medical education around neurodevelopmental disabilities and moving towards actions to increase education in the curriculum.

ASD-RB Program for Youth in Inpatient Psychiatric Facilities: Haley Morris; Roxanna Bendixen, PhD, OTR/L, FAOTA

A needs assessment was completed to explore the confidence of staff of the youth inpatient unit at the MUSC Institute of Psychiatry (IOP) in supporting the ASD population during their stay and the willingness and/or interests of staff in additional training necessary to provide appropriate and effective care to these children. The results of this needs assessment aided in creating a Clinical Practice Guideline for staff of the unit to reference and ultimately better support the youth and adolescents at IOP with ASD and related behaviors.

Early Detection of Cerebral Palsy (CP) - Methods and Future Implementation at Prisma Health - Upstate (Greenville, SC): Zeel Patel DO;  Juli Windsor, PA-C; Steven Ma, MD; Kristina Bates, PhD

Our aim was recognition of best practices implementation for early recognition of cerebral palsy (CP) by creating a SWOT (strengths, weaknesses, opportunities, threats) analysis to determine methods of implementation as well as determining barriers to implementation. To understand current practices in our developmental pediatrics clinics in Prisma-Upstate (Greenville, SC), we administered a survey to all providers (attendings, advanced practitioners, fellows) who work with infants at high risk for CP and compiled information regarding current diagnostic measures utilized, provider level of comfort regarding CP diagnosis, barriers to various training measures to aid in diagnosis of CP, and more. Using this information, we were able to determine multiple areas for improvement but also strengths in our clinic based on best practice measures for early CP detection.

Towards Inclusive Pedagogy: Developing an Undergraduate Course to Enhance Accessibility: Rebecca Smith Hill; Clare Perrazzo; Marjorie Cloninger, PhD

We worked to create an undergrad course where students will learn about the history of college accessibility for people with disabilities, then conduct a needs assessment of faculty related to their knowledge & willingness to enhance course accessibility, and present findings to key stakeholders. This course will be taught through the USC Honors College in Fall 2024.

The Common Connection between Avoidant Restrictive Food Intake Disorder and Mental Health for Pediatrics: A Needs Assessment: Alexis Brown

PACE and MUSC: Filling the oral health gap: Whitney Merrick; Carrie Cormack DNP

This project is the first step of a program I hope to create and implement that will bring MUSC dental students into Pattison's Academy for Comprehensive Education (PACE), increasing dental students exposure to a population that they may not come across during thier schooling, allowing them to have hands on experience and also bringing oral care directly into the school and to the kiddos in their optimal environment. Literature review and needs assessment will give me a foundation for how to tailor the needs of both students/family, school staff and MUSC dental school so the program is as effective as possible.

After-School Program for Teens with Intellectual and Developmental Disabilities: Hayden Davis; Roxanna Bendixen, PhD, OTR/L, FAOTA

The objective of this project is to create an after-school program to help teens with Intellectual and Developmental Disabilities (IDD) participate in meaningful activities by teaching them social and life independence skills while still in school to assist with transition to adult services. This capstone project is in collaboration with Beyond BASIC, a day program for adults with IDD to enhance their independent living and social skills, as well as a summer program for teens with IDD.

Assessing Resiliency and Coping Strategies of Pediatric Burn Patients: A Needs Assessment: Kate Maslowski; Roxanna Bendixen PhD, OTR/L, FAOTA; Tiffany Smith, RN, BSN, CPN

To provide the pediatric burn team with a variety of effective activities that assist children on the unit in building coping strategies to manage mental health disorders that may develop post-accident.

Cancer Screening for Patients with Intellectual Disability: Exploring Parent and Caregiver Perspectives: Jennifer Ryan;  Amy Wardyn; Janice Edwards; Richard Ferrante

I surveyed parents and caregivers of adults with intellectual disability to learn more about their perspectives on and experiences with cancer screening for the adult with ID. I was able to better understand barriers faced by this population and gathered suggestions to help improve access.

The Autistic Adult’s Perspective on Genetic Testing in the Prenatal and Cancer Settings: Robin Urban; Janice Edwards; Dr. Ferrante

Surveyed autistic adults on their opinion about prenatal genetic testing and cancer genetic testing that could be offered to any individual.

The Perspectives on the Transition to Adult Health Care from Adults with William Syndrome and their Caregivers: Andrea Johnson; Janice Edwards, Dr. Ferrante

Transitioning to adult care services is a crucial time for young adults with a genetic disorder. Many of these conditions are diagnosed early in childhood, with follow-up care fragmented and dependent on the specific needs of the individual. Williams Syndrome (WS) is a complex genetic disorder characterized by multisystemic features. The variation in the clinical presentation of adults with WS can influence the individual’s ability to transition from pediatric care because of its medical complications, variable and poorly characterized psychiatric needs, and intellectual disability that causes difficulty communicating health-related needs to providers. This study focused on understanding the needs of adults with WS and their caregivers during adulthood. An electronic survey was distributed to caregivers of adults with WS over age 18 to provide insights into the care accessed and resources desired. Following the survey, virtual, paired interviews were completed with adults with WS and their caregivers. There were 177 survey responses from caregivers recorded with 97 analyzed and 8 virtual, paired interviews completed. Descriptive and comparative statistical analyses were performed. Free-response questions and interviews were transcribed, and a grounded theory approach was performed for thematic analysis. Over 45% of caregivers reported being dissatisfied with the adult with WS care with the highest dissatisfaction in mental health care (63.9%). Both caregivers and adults with WS noted improvements in satisfaction of care and perceived provider knowledge about WS when they were involved with a WS clinic, they were provided resources on the transitional process, and they received information on adult health issues. These findings highlight the importance of continued support and education for adults with WS. We make several recommendations based on this study including increasing access to WS clinics, providing open communication with adults with WS, and expanding practice guidelines to address adult health needs. Future research should continue exploring the WS community's needs during the transition to adult health care.