LEND Leadership Projects
Leadership Projects are part of the core curriculum for all our LEND trainees. As such, every trainee participates in at least one Leadership Project during their LEND training. LEND faculty meet annually to develop leadership projects on a variety of public health or clinical topics of importance to individuals with neurodevelopmental disabilities and their families. In addition to learning about healthcare topics of significance, trainees develop leadership skills as they participate on a project with faculty and trainees from multiple disciplines. Most projects culminate with a poster which is presented by the trainees at the Ohio MCH Poster Day.
2024-2025 Projects
Our project’s objective is to understand the perspective of autistic adults using social media/TikTok and their thoughts and feelings about the information they see regarding autism on social media/TikTok. To do so, LEND trainees created a steering committee comprised of professionals and individuals with lived experience of disability to review previous work on the research project and establish goals and agendas for the upcoming year. LEND trainees reviewed the literature on current perspectives of autism in social media, refined project questions and objectives for clarity and focus, and developed and submitted IRB protocol. LEND trainees recruited participants for the #autism focus group and conducted two focus groups. Future directions will involve conducting additional focus groups, along with coding and analyzing the data.
Authors: Carnicia Eghan; Jenny Middendorf; Lauren Misik; Margaret Kramer; Taylor Richardson; Jessie Green, PhD; Jastyn Wallace, MSW, LSW; Andrea Witwer, PhD
Aspirations is a group-based weekly social skills program at the Nisonger Center for adolescents and young adults (aged 15-30 years) with Autism Spectrum Disorder. While the Aspirations participants are meeting, their caregiver(s) are invited to participate in a weekly informational support group, the Aspirations Caregiver Group. The group offers resources and support to caregivers navigating the participant’s transition from adolescence into adulthood. Trainees involved in this leadership project created a manual for future leaders of the caregiver group using universal design principles. Two versions of the manual were created (physical and digital) to increase accessibility and usability among current caregiver group facilitators. Trainees frequently met with group facilitators to discuss manual contents and to test out manual instructions to ensure a clear understanding of current facilitators. The manual will be used and edited as needed for future facilitators of the Aspirations Caregiver Group.
Authors: Marissa Fogg, S/OT, Luke Miller, Family Advocate, Jessie Green, PhD
The Buddy Up for Life (BUFL) organization provides programs focusing on independence, health, and friendship for individuals with Down syndrome. Their life skills programs focus on building and refining adaptive skills across various areas, including cooking. Previously, a pilot cooking skills assessment was created by LEND trainees to track knowledge and performance of each student for each cooking skill. The purpose of this project was to refine the existing functional cooking skills assessment to improve functionality of the assessment for use in the BUFL Cooking for Life Course. The cooking assessment was methodically refined using two Plan, Do, Study, Act (PDSA) cycles. The first PDSA cycle included edits to make the assessment more user-friendly, such as changing font size, adding visual prompts, and reducing white space. Then, the assessment was tested at a BUFL cooking class. The second PDSA cycle included trialing the revised assessment, including the new title of Recipe Roadmap. LEND trainees attended the BUFL Cooking Class as observers to view how using the roadmap interacted with the cooking experience between buddies and students. Conclusions from this trial were that the paper Recipe Roadmap is not an effective way to track progress during cooking class. A new version of the Recipe Roadmap was developed by embedding skills and scoring onto the recipe sheet to minimize the difficulty navigating extraneous papers. In conclusion, the present changes made to the BUFL Recipe Roadmap were developed to ensure that the assessment reflects the student’s actual needs while minimizing the burden on the facilitating buddy. Overall, the crucial future direction will be for BUFL to continue utilizing this tool and strategically implement it into their cooking courses. By regularly assessing how the tool works within their dynamic environment, BUFL can refine and adjust the assessment process to ensure its effectiveness, making ongoing improvements based on practical experience and participant feedback.
Authors: Kelsey Butz, BA, Sage Clemons, BA, Jordan Mori, BA, Bella Sansone, BS, Bridget Chapman, MA, CCC-SLP & Kelly Tanner, PhD, OTR/L, BCP
The Health Resources and Services Administration’s Maternal and Child Health Bureau (MCHB) released Leadership Competencies in 2007 to support the training of healthcare professionals, including interdisciplinary/interprofessional (ID/IP) team building, which emphasizes collaborative leadership, decision-making, and role clarity for positive client outcomes. Building on a systematic review conducted by last year’s LEND trainees, this project piloted a case-based simulation exercise to strengthen interprofessional competencies among graduate-level trainees across neurodevelopmental and related clinical specialties for individuals with intellectual and developmental disabilities (IDD/DD). The program, conducted across The Ohio State University, University of Illinois–Chicago, and Cincinnati Children’s Hospital, involved four themed vignettes—developed from LEND competencies—on Social Determinants of Health, School-Age, Sexuality and Developmental Disability, and Transition Age, and included trainees from diverse disciplines such as speech-language pathology, occupational therapy, social work, psychology, nutrition, nursing, disability studies, self/family advocacy, genetic counseling, developmental behavioral pediatrics, special education, medicine, and public health. Pre- and post-assessments using tools like ICCAS and ATHCT showed most participants reported “Excellent” or “Very Good” interprofessional collaboration skills, with feedback highlighting the value of discussion-based learning in an informal setting. The study team continues to revise vignettes using participant feedback and plain language input from the OSU DEEP Panel, with plans for comprehensive analysis to inform future LEND educational tools.
Authors: Katarina Garibian; Trevor Nguyen; Crystal Williams, Ph.D.; Luke Miller; Dawn Allain, M.S., L.G.C.; and Elizabeth Barnhardt, D.O., MAEd
Contributing Institutions: The Ohio State University / Disability Experience Expert Panel (DEEP), University of Cincinnati, and University of Illinois-Chicago.
The Youth Autism Self-Advocacy Program (ASAP) is a 10-week, group-based program designed to empower Autistic youth and those with intellectual disabilities, ages 11 to 15, by developing leadership, communication, and self-awareness skills. LEND trainees researched evidence-based strategies to generalize skills, and the findings emphasized the importance of workshops with strengths-based approaches to aid in the development and practice of social and practical skills. Feedback from the advisory committee and pilot group indicated that asking questions in the school setting is a challenge for participants. To address this, facilitators recruited past Youth ASAP participants to gauge interest and determine scheduling before finalizing registration. LEND trainees, in collaboration with LEND self-advocates, adapted the Youth ASAP curriculum to create a workshop focused on understanding when and how to ask questions at school, incorporating an acronym, visual aids, interactive activities, and case scenarios. The workshop was delivered through an accessible PowerPoint presentation, with printed visual aids provided, and concluded with a participant satisfaction survey and facilitator observations. Although two participants registered for the workshop, only one attended and actively engaged by asking thoughtful questions and providing relevant comments. The participant reported high satisfaction in their survey, found the acronym helpful, and completed five of the six question steps independently with minimal prompting. Facilitators reflected on the workshop’s development and implementation, noting that the inclusion of self-advocates enhanced engagement. They identified future workshop topics including emotional regulation, friendships, setting boundaries, and handling bullying.
Authors: Annie Durant; April Gargac; Taylor Richardson; Liana Burk, PT, DPT; and Ella Neruda
Individuals with intellectual and developmental disabilities are often overwhelmed by the sensory stimuli in dental offices leading to increased patient anxiety and escalated behaviors. We created a video with the aim of improving patient experiences at The Nisonger Center Dental Clinic by capturing the sounds an individual may experience during their dental visit. We described accommodations to mitigate the distress experienced during treatment by utilizing modeling and instructional strategies that involve learning about skills or activities through a video. This project was completed in collaboration with a LEND Self-Advocate trainee who offered insights from her lived experiences. Additionally, the Self-Advocate trainee created a communication board to encourage patient self-advocacy and improve patient-provider communication with input from Bridget Chapman, M.A. CCC-SLP, Nisonger’s Speech-Language Pathology LEND Faculty.
Authors: Tanvi Das; Ella Neruda; Nathan Tragesser, DMD; Stephen Beetstra, DDS, MHSA
STEPP, the Substance Abuse, Treatment, Education, and Prevention Program, is a program for expectant and newly current mothers recovering from addiction. It provides compassionate, non-judgmental, care to help guide mothers safely through pregnancy, delivery, and follow-up. The program provides mothers with a safe space and comprehensive, personalized care in such areas as mental health, obstetric care, and newborn care planning.
Educational sessions attended by the mothers and babies are also part of the program and are facilitated by LEND trainees. LEND trainees from a variety of disciplines work together to design and present a series of monthly sessions blending instruction on pediatric development with engaging activities. Subjects covered include development of speech-language-hearing skills, motor skills, and sleep. Activities such as sing-alongs, story-times and dancing are incorporated throughout each presentation to engage babies and mothers. Trainees obtained feedback from the mothers via written questionnaires after each session, allowing refinements and improvements between each session.
Participation by LEND trainees in the STEPP program furthers the mission of LEND and the Nisonger Center by fostering interdisciplinary collaboration. Trainees have the opportunity to gain knowledge outside of their discipline and understand trauma-informed care. Mothers receive evidence-based curriculum to enhance their knowledge of child development, allowing them to more fully support and nurture their children.
Authors: Paige Argent, Ariel Miller, Liam Smyth
2023-2024 Projects
The Independent Living for Adults with Autism project was focused on gaining information about what independent housing options currently exist in Ohio for adults with autism. The project was overseen by two mothers of individuals with autism and a LEND trainee team consisting of one family advocate, a Speech Language Pathology graduate student, and an Audiology graduate student. The plan for this project was to discover what resources, if any, exist in the state of Ohio for housing for individuals with autism. The resources provided in other states were also topics of interest to determine if there is an established outline for how to provide these resources.
Authors: Oscar Bermeo Blanco, DVM M.S., Ellen Cook, Hailey Long, B.A., Linda Rittenhouse, & Meredith Suhr, B.A.
The Buddy Up for Life (BUFL) organization offers programs that emphasize friendship, independence, and quality of life for persons with Down syndrome. For those ages 14 and older, the BUFL organization provides many courses that foster adaptive skills in areas such as technology, finance, communication, communities, and cooking. Students are supported in learning and retaining skills in these areas through their lifelong learning journeys. The aim of this project was to address the current gap in the literature by creating an adapted assessment for the BUFL cooking program.
Authors: Liz Mance OTD OTR/L, McKenna Egan BS, Allison Davis, Kelly Tanner PhD OTR/L BCP
In 2003, the National Assessment of Adult Literacy (NAAL) reported that 14% of the adult, English-speaking US population were able to use no more than simple or concrete literacy skills (defined as below basic literacy based on their parameters). This translated to about 30 million US adults. Among individuals who identified as having multiple disabilities 21% reported having below basic literacy skills.
Literacy skills are related to many daily living activities with poor literacy potentially contributing to the need for increased services and supports and a decreased quality of life. Our literature review indicated that there is little research available regarding literacy skills of adults with Down Syndrome. However, results from (Kutner, et.al. 2006) showed that only 39% of participants who completed a standardized reading test were able to receive a standardized score, suggesting that most of the individuals did not demonstrate baseline literacy skills necessary to complete the instrument. Although people with Down Syndrome often have challenges in expressive language, some studies have suggested that literacy acquisition may improve language development overall in individuals with Down Syndrome.
Adult Literacy Ohio is an organization which teaches literacy skills and empowers adults with developmental disabilities. Learners work on reading, writing, or communication goals to improve community navigation, workforce development, and quality of life. Learners come to the program with a range of skills and a wide variety of programmatic goals.
Authors: Kendall Abbas MD, Grace Ermie, Rachel Heiber, Melinda Prickett, Vino Viswanathan, Paula Rabidoux, PhD
The Substance Abuse Treatment, Education, and Prevention program (STEPP) is an integral component of the Ohio State University Wexner Medical Center’s Maternal Fetal Medicine practice, focusing on providing comprehensive care to expectant patients managing addiction. STEPP offers a range of care services including medication management, counseling, and high-risk obstetric care to meet the complex needs of their patients. Patients can participate in STEPP prenatal and post natal for up to a year after their child is born, and their infants and siblings are welcome to attend sessions with their parent.
The LEND Leadership Project partnered with STEPP this year to provide education about typical development across domains, such as communication, motor, and cognitive development. These sessions had a unique activity related to the month’s topic, an informative presentation with typical milestones and resources to encourage development, opportunities for discussion, and a take home sheet with a session summary and suggestions for further activities. The primary objective for this project is to deliver affirming and evidence-informed curriculum to empower participants with increased knowledge of development and strategies to foster supportive and nurturing environments for and with their children.
Authors: Andrea Witwer PhD; Emily Cary PhD; Lori Grisez DPT PT; Khadeja Mahmod; Laura Herrold Johnson
Community Health Workers are trained professional who provide services to wide range of individuals including those with mental health and Intellectual and Developmental conditions. They are crucial for building bridges between healthcare systems, political systems, and the community population. Their role as professionals is diverse and extremely challenging. Everyday, they are exposed to trauma and stressors indirectly and directly in their workplace. It can be difficult to sometimes not take the burden of the individuals they are serving. Therefore, in order to reduce stress and burnout, self-care is vital. Self-care helps to improve overall health and wellbeing. As professional, when your mental wellbeing is stable and healthy, you can pave the way for better treatment outcomes.
Our poster focuses on self-care and why its important for community health workers (or other direct professionals) to prioritize their own self-care. We also provide number of ways to establish a self-care routine as well as various resources for self-care needs. Next steps in this project include providing extra resources to assist Community Health workers in their duties, clear language toolkits on tackling some challenging conversations with individuals and their families.
Authors: Andrea Witwer PhD, Manisha Khatiwada, Durga Subedi, Durga Mishra
Our project’s objective is to understand the perspective of autistic adults using social media/TikTok and their thoughts and feelings about the information they see regarding autism on social media/TikTok. To do so, LEND trainees created a stakeholder steering committee comprised of professionals and individuals with lived experience of disability, specifically autism. To create the committee, LEND trainees reviewed Project STEER workbook, decided what aspects of STEER we wanted to implement in our project, recruited a stakeholder group of 4 people, designed a stakeholder group script, and met with a stakeholder group for 60 minutes to gain a broad understanding of their social media use and the information they see on autism. LEND trainees then refined the #autism project questions and objectives using the input from autistic stakeholders. Using this information, LEND trainees developed focus group questions, reviewed examples of other focus group studies and materials, developed an IRB protocol for the #autism project, and submitted the protocol.
Authors: Andrea N Witwer PhD, Jessie Green PhD, Jastyn Wallace, Claudia Como, Harley Crisp, Peyton Gorman, Julia Nauman
To ensure the novelty of our exercise, we conducted a literature review to understand current interprofessional educational exercises used with DD professionals and within the healthcare system broadly. Additionally, we reviewed the outcomes and assessment measures commonly used in interprofessional educational exercises. Next, we evaluated the LEND core competencies for areas where interprofessional challenges are most salient. Trainees drafted vignettes on interprofessional clinical challenges in the context of DD. Each vignette underwent an iterative review process and were critiqued on their alignment with LEND core competencies and potential for interprofessional collaboration. Based on our evaluations, the vignettes were expanded upon to incorporate an interprofessional conflict component. Lastly, trainees developed a set of discussion questions designed to stimulate interprofessional collaboration. We engaged LEND program leaders at the University of Cincinnati and the University of Chicago to assess their interest in partnering in this multi-site project and evaluate their perceptions of the project feasibility.
Authors: Rylee Duncan, B.S., Lauren Yoder, BSN, RN, CPEN, Alicia Parsons, B.A., Linda Solamen, M.D., Dawn C. Allain, M.S., CGC, Elizbeth Barnhardt, D.O.
By conducting staff interviews with providers and support staff at the OSU Nisonger Dental Services, LEND trainees identified barriers to care and factors that influence positive patient experiences. Three initial issues were identified: difficulty getting to the clinic, anxiety during the first visit, and remaining still for a Panorex (X-ray). LEND trainees completed a robust task analysis of all three scenarios, identifying the steps and explicit directions for each. After the task analysis was completed, each explicit step was filmed and compiled into a video. Videos were then altered to provide multiple modes of accessibility, including written instructions, and audio recordings describing procedures or experiences the patients will encounter in the clinic. The completed videos will be posted on the OSU Nisonger Dental Services website to help patients prepare for their upcoming dental visit.
Authors: Claire Pritchard, S/OT; Caitlin Baine, M.S; Stephen Beetstra, DDS MHSA
Resources for adults with ID/DD seeking mental health services are lacking and it can be exhausting for adults with mental health conditions to be passed on from provider to provider. The Nisonger RRTC project, which seeks to improve services and supports for adults with ID/DD and mental health conditions, created the Mental Health Therapy Toolkit to help with this problem. The toolkit provides a space for its users (adults with ID/DD) to write about who they are, accommodations they may need in therapy, how they communicate and learn best, their past experiences with therapy, and how they feel about their disabilities and mental health conditions. The toolkit is in clear language and intended to be given to new providers a person with ID/DD may encounter to ease the burden of the person reexplaining themselves and their problems to a new provider each time. The current project aimed to create a tutorial for users of the Mental Health Therapy Toolkit that would be easy to use and understand.
Authors: Rebecca Margolis, Christine Brown, and Dr. Andrea Witwer PhD
Neurolingo aims to teach Autistic social skills to neurotypical individuals in order to increase participant knowledge of neurodivergent communication, provide skill building opportunities, and practice inclusive communication. To achieve this goal, the LEND Leadership Project team worked to develop the Neurolingo curriculum, intervention design, and outcome measures.
Authors: Jastyn Wallace, MSW, LSW, Erin Harris, MSW, LISW-S, Madison Fecher, B.S, Tori Kaufman, Kendall Armstrong, B.A.
Accessible healthcare describes healthcare services that are inclusive for all diverse individuals and are accessible in terms of environment, equipment, and attitudes. For many adults with disabilities, it is difficult to find high quality, accessible healthcare services that meet their needs. Therefore, many individuals with disabilities have decreased access to healthcare and experience more health problems than non-disabled adults (Clemente et al., 2022).The Ohio Disability and Health Program, comprised of Nisonger staff, The Center for Disability Empowerment, The Ohio Government Resources Center, and UCUCEDD Staff, aimed to bridge this gap via a variety of projects. Durga is a Community Health Worker that specializes in working with people with disabilities to determine their needs and to find resources to help meet those needs. To ease Durga’s work, and ensure she was able to connect individuals with providers accessible to them, LEND trainees collaborated with the leadership team to investigate the lack of knowledge about accessibility of healthcare providers in Ohio. Our investigation included revision of a previously created survey requesting the healthcare experiences of adults with disabilities with the goal of creating a navigation guide of accessible providers in Ohio.
Authors: David Ellsworth MPH, Emily Stevens PT, DPT, Kaitlyn Myers BA, Morgan Leatherman BS
The objective of this leadership project was to identify methods to support teachers and school faculty at a suburban Columbus elementary school to assist children with or without a diagnosis of autism spectrum disorder (ASD) and their families. It was identified that teachers and faculty at the school were struggling to support children and families who needed resources due to concerns about autism. The administration was interested in identifying ways to better support the children, their families, and the teachers.
Authors: Lori Grisez PT DPT, Cassie Akih BA, Halsy Paxton BA, Margaret Meeks BS, Madison Filipkowski PT DPT
The differences and unique challenges that autistic individuals experience in comparison to neurotypical peers can place them at a higher risk to experiencing trauma Lobregt-van Buuren, 2021). As clinicians working with people who are at a higher risk for experiencing trauma, an understanding and implementation of trauma-informed approaches are critical. The goal of this project is to inform clinicians who work with individuals with autism on the meaning of trauma-informed care, why we should make our practices trauma-informed, and ways to implement trauma-informed care into clinical practice.
Authors: Alicia Parsons BA
2022-2023 Projects
The neurodiversity movement posits that autism is a form of diversity, not a disorder (Jaarsma & Welin, 2012). Moreover, research has shown that when autistic people engage in masking it is harmful to their mental health (Cassidy et al., 2019; Hull et al., 2017). In this poster we describe how clinicians can use the person-centered-care model (Henry & Vladek, 2016) to develop neurodiversity affirming social-communication treatment goals.
Authors: Grace Terry, BS; Dr. Paula Rabidoux, PhD/CCC – SLP
Contact: Dr. Paula Rabidoux, PhD/CCC-SLP
The Buddy Up for Life (BUFL) organization provides programs focusing on independence, health, and friendship for individuals with Down syndrome. The BUFL Life Skills 101 program is an introductory course, accessible to individuals 14 and up, that adapts the learning environment to build adaptive behavior skills in cooking, finance, and technology. These skills are important for increasing autonomy, independent living, and employment. While there is limited research in developing these skills specifically for individuals with Down syndrome who have lower literacy skills, this project seeks to address this gap by implementing new strategies in the program based on clinical experience and literature. This project aims to adapt existing BUFL Life Skills 101 curricula to be accessible to those with lower literacy skills using evidence-based practices, teaching strategies, and visual supports. It is proposed that the next steps for the BUFL Life Skills program include continuing to develop the Life Skills 101 curriculum, refining the Finance and Technology curricula and teaching strategies, fostering experiential learning through community-based activities, and creating assessment tools for monitoring student progress.
Authors: Haley Day, BS, BA, Aishia Brady, BSFCS, Najiba Zaidova, OTD, OTR/L, & Kelly Tanner, PhD, OTR/L, BCP
Contact: Kelly Tanner, PhD, OTR/L, BCP
Siblings of individuals with intellectual and developmental disabilities have a greater risk of developing mental health issues compared to those without siblings with IDD (Bowman et. al, 2014). Our target population, teen siblings, are particularly vulnerable given their age. A literature review was completed to answer two main questions: what the need for support in the adolescent age group is who have siblings with IDD and is the benefit of support programs for this population. An interview was then administered to young adult siblings who have brothers and sisters with developmental disabilities to gather more information pertaining to our specific program development. Through partnership with OhioSibs, a photography-based program was developed based on the information from the literature review and interviews. LEND Trainees then piloted this program implementing a pre and post assessment for the participants. Trainees gained insight and practice into literature review for research-based program development, administering interviews, and supporting teens who have brothers and sisters with IDD. Trainees concluded this experience with key take-away’s about adolescents with siblings who have IDD, including challenges that this population may face, gaps in research about this population, process of program development, and outcomes of a photo-based program.
Authors: Mackenzie Ackerman, Mason Austin, Domonique Hillmon, Hanna Kim, Malaak Shalash, Diana Temple, Paula Rabidoux, PhD/CCC-SLP
Contact: Paula Rabidoux, PhD/CCC-SLP
Self-Advocate trainees have been an important member of the LEND team for many years. However, many materials used have not been created with a self-advocate or had the self-advocate in mind when created. This creates barriers to access LEND for our self-advocate trainees. This leadership project compiled a LEND-related acronym and resource list, begun to put academic readings into a clear language and accessible format, and began updating the Individual Learning Plan (ILP) for accessibility and clear language.
Authors: Jessie Green, PhD, Ashley Poling, Janae Miller, Christine Brown, Jastyn Wallace
Contact: Jessie Green
Direct Support Professionals (DSPs) are critical to the lives of individuals with disabilities. They not only support, but empower individuals in all aspects of living, (2017 PCPID Full Report_0.Pdf, n.d.). Yet, the DSP role faces wage challenges and employment shortages. The President’s Committee for People with Intellectual Disabilities (PCPID) concluded that the ramifications of a neglected direct support workforce could include widespread negative economic and social consequences impacting individuals with disabilities and their families, caregivers, DSPs, provider agencies, and communities, (2017 PCPID Full Report_0.Pdf, n.d.). The purpose of this project is to: 1) gain a deeper understanding of the DSP workforce crisis, 2) write a policy brief to educate policy makers and stakeholders, 3) analyze the survey responses from DSP professionals to take and to gain their view of the workforce, and 4) to share the data with stakeholders.
Authors: Gabrielle Moots, Jaimie Albert DPT, Kayla Alvis BCBA, Kimberly O’Neil, Lauren Hackenberg, Christine Brown, David Ellsworth
Contact: David Ellsworth
Downloadable Copy: https://nisonger.osu.edu/wp-content/uploads/2023/08/2023_Poster_DSP_Qualative-Analysis_DE_8.10.23.pdf
Moms2B is a program aiming to improve infant mortality in high-risk regions by providing expecting and new mothers with education and social support resources. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program through the Ohio State University Nisonger Center has partnered with Moms2B-Columbus since 2019. This partnership was created with the intent of LEND trainees providing the Moms2B program with resources, content, or other supports which may assist with learning for moms. Since this partnership was created, LEND trainees have created BabyZoom content, education surrounding safe spacing of pregnancies, and developmental curriculum for infants and young children.
Authors: Theodora Bowman, Emily Cary, PhD, Durga Mishra, B.S., Abigail Nelson, PT, DPT, Lori Grisez, PT, DPT, PCS & Andrea N. Witwer, PhD
Contact: Andrea Witwer or Lori Grisez
Health Care Transition (HCT) is the process of providing lifelong, comprehensive health care as a child becomes an adult (Rast et al., 2020). Various health care disciplines can be a part of this process (i.e., medical, speech pathology, physical therapy, occupational therapy, ophthalmology, pharmacy, dental). Moving from pediatric to adult health care can be especially challenging for individuals with developmental disabilities (Nathenson & Zablotsky, 2017). In 2019-2020, over 75% of children with special health care needs ages 12-17 did not receive services to plan for transition to adult health care (Children and Youth with Special Health Care Needs, 2022). People with Down syndrome and Autism Spectrum Disorder can both fall under this category. Down syndrome is a genetic condition that results from an extra copy of chromosome 21 (Down Syndrome, 2022). Autism Spectrum Disorder is a neurodevelopmental condition that results in restricted and repetitive behaviors and persistent deficits in social communication skills (Diagnostic Criteria for 299.00 Autism Spectrum Disorder, 2022). People with Down syndrome and Autism oftentimes have a high number of health care needs (Pediatric-to-Adult Health Care, 2020; Down Syndrome, 2022). Additionally, many people with these conditions benefit from physical, occupational, and speech therapy services (Down Syndrome, 2022). Children often begin adult health care around the time they exit the school system (Nathenson & Zablotsky, 2017). This marks when many of them begin to no longer receive school-based services. This further highlights the importance that individuals with Down syndrome and Autism receive frequent health care not only during the adolescence, but also through adulthood to ensure optimal health and wellbeing. The purpose of this research project was to identify health care services, clinical guidelines, and resources that can assist adults with Down syndrome and Autism Spectrum Disorder in central Ohio, their families, and healthcare providers. Several research databases (PubMed, PsycINFO, Google Scholar) were utilized to review the literature on health care transition, common health needs in Down syndrome and Autism, and adult health care in Down syndrome and Autism. Recommendations from health care providers in central Ohio (Nationwide Children’s Hospital, The Ohio State University Nisonger Center) were also researched. Finally, toolkits, clinical guidelines, and resources were collected from professional organizations’ websites.
Authors: Monica Karam, BS
Contact: Lori Grisez
2021-2022 Projects
Autism spectrum disorder (ASD) or attention deficit/hyperactivity disorder (ADHD) can impact several skills required to safely drive, including problem solving, attention to task, working memory, sensory processing, and motor integration (ADED, n.d.,a,b). Currently, Martha Morehouse houses the Occupational Therapy Driver Rehabilitation Program which supports safe, independent driving to those affected by neurological, orthopedic, developmental, or age-related changes. The current clientele seen in this program includes neurodiverse youth. Occupational therapists at this site report neurodiverse youth and adult’s performance on in-clinic assessments do not appear to accurately predict driving success on the road. The purpose of this project is to determine the ‘gold standard’ of assessing pre-driver readiness in neurodiverse youth and adults.
Geneva Sandridge, OTD Student & LEND Trainee, Lauren Shepler, BS Communication and LEND Trainee, Kelly Tanner, PhD, OTR/L, BCP
Contact-Kelly Tanner PhD OTR/L-Kelly Tanner
BabyZoom is a branch of a larger project, Moms2B, an initiative at The Ohio State University to improve infant mortality rates, decrease rates of premature birth, and address maternal and fetal health disparities by working with expectant and new low-income women (“moms”) in central Ohio. BabyZoom is a free, year-round program for new moms that provides support during their baby’s first year of life. The BabyZoom program provides education with the goal of empowering Moms to support their baby’s development, ensure their baby’s safety, and access local resources. The program aims to enable mothers to identify concerns with their baby’s development or health in order to seek any necessary early evaluation and treatment.
Caroline Young , Melissa Smith, Lori Grisez PT, DPT
Contact-Lori Grisez PT, DPT-Lori Grisez
The goal of the Family Experience Leadership Project is to provide students with the opportunity to see what it is like on a daily basis for a family which includes children with developmental disabilities. The LEND Trainee interacted with a family in which two of the three children are diagnosed with disabilities – one with down syndrome, and the other with autism. Being immersed in the family’s typical day to day activities such as family mealtime, weekend night activities, trips to the movies and much more offered insight on what it is like raising children with disabilities. The significance of interdisciplinary work, the inclusion of family, and the importance of advocacy were among the numerous takeaways from this project. The trainee was able to gain an understanding of the needs of both the family and the individual with disabilities, creating a future of knowledgeable practitioners.
Omotayo Agaja
Contact-Gail Whitelaw PhD-Gail Whitelaw
In 2021, a pilot study was conducted with The Ohio State University Nisonger Center and Al Muntazir Special Needs School (AMSEN) in Tanzania (Tz) using the Extensions for Community Healthcare Outcomes—ECHO® model. ECHO® has been found to increase self-efficacy in participants’ ability to provide up-to-date health care and reduce cost barriers related with capacity building (Zhou et al., 2016). The goal of the pilot study was to effectively adapt the ECHO® model to increase teacher knowledge of evidence-based practice for students with Intellectual and Developmental Disabilities (IDD). The present study built upon the pilot by increasing the number of teachers and schools involved. Specifically, the 2022 LEND-ECHO Tz Project included 17 schools across 4 Tz cities. Faculty and trainees from developmental behavioral pediatrics, special education, clinical psychology, speech language pathology and occupational therapy participated. Special education teachers, Bijal Lal and Gwaliwa Mashaka, organized participants from Tz. The objectives for the project were for 1) teachers to learn evidence-based practices (EBP) to support students with IDD; 2) teachers to apply their knowledge to improve student outcomes; and 3) LEND trainees to learn cultural awareness and presentation skills on EBP.
Lindsey Becker, B.A., Greta Hilbrands, PsyD., Paula Rabidoux, PhD, CCC-SLP, Andrea Witwer, PhD, Jessie Green, M.Ed., CESP, Bijal Lal, M.Ed., & Gwaliwa Mashaka
Contact-Andrea Witwer PhD-Andrea Witwer
Moms2B is a community-based pregnancy program for low-income women in Central Ohio with the highest infant mortality rates. This is particularly salient, as Ohio continues to have one of the highest infant mortality rates in the country (6.9). Furthermore, many of the mothers themselves have Intellectual and Developmental Disabilities and/or their children have developmental concerns. The aim of the program is to reduce infant mortality and eliminate racial and economic disparities by educating and empowering mothers. Moms2B holds weekly sessions on various topics and provides supplemental supports to the mothers and their families. Moms2B requested that the OSU LEND trainees provide them with updated, research-informed lessons and fliers for the mothers. With the various diversity factors in mind, the goal of this project was to develop culturally competent, accessible, and meaningful curriculum to improve health outcomes for mothers and babies.
Greta Hilbrands, PsyD, Harley Comtois, B.A., Brittany Lipper, LSW., Elise Starkey, MS OTR/L
Contact-Andrea Witwer PhD-Andrea Witwer
Tuberous Sclerosis Complex (TSC) is a rare neuro-cutaneous disorder that affects multiple systems of the body including the brain, eyes, kidneys, skin, amongst others (Northrup et al., 2021). Individuals diagnosed with this condition are also at risk for other difficulties in their life: autism, intellectual disability, behavioral issues, and more. Due to TSC being a chronic disorder, the potential health and financial burden on families and individuals are high. While it can be costly for families, they may still not have access to quality, integrated care due to location, social determinants of health, or lack of practitioner knowledge. Without a TSC Clinic or TSC Center of Excellence nearby, families may not have the resources or knowledge to advocate for their child in a general clinic setting. The goal of this project was to gather information and resources for practitioners and families to navigate a difficult diagnosis and process.
Jordyn Rolniak, BA; Hannah Hudelson, BS; Morgan Von Holle, BS, RN; Gail Whitelaw, PhD
Contact-Gail Whitelaw PhD-Gail Whitelaw
Neurodiverse Peer Group (NPG) is a program originally developed in 2020, facilitated by LEND trainees to support students across The Ohio State University campus with engaging socially among neurodiverse peers and increase overall acceptance of neurodiversity. Research has shown that college students who have autism commonly experience depression and loneliness (Gelbar et al., 2014). NPG provides ample opportunities for these barriers to be alleviated for neurodivergent, autistic, and neurotypical individuals through practicing socialization, communication, and friendship-building skills via a variety of activities and events, including (but not limited to): game nights, movie screenings, ice skating, and more.
Morgan Nelson, BSSW, LSW, Ana Fernandez, BA, Erin Harris, MSW, LISW-S
Contact-Erin Harris-Erin Harris
Direct Support Professionals (DSPs) are critical to the lives of individuals with disabilities. They not only support, but empower individuals in all aspects of living, (2017 PCPID Full Report_0.Pdf, n.d.). Yet, the DSP role faces wage challenges and employment shortages. The President’s Committee for People with Intellectual Disabilities (PCPID) concluded that the ramifications of a neglected direct support workforce could include widespread negative economic and social consequences impacting individuals with disabilities and their families, caregivers, DSPs, provider agencies, and communities,(2017 PCPID Full Report_0.Pdf, n.d.). The purpose of this project is to: 1) gain a deeper understanding of the DSP workforce crisis, 2) write a policy brief to educate policy makers and stakeholders, and 3) create a survey for DSP professionals to take and to gain their view of the workforce, and begin a survey analysis to share data with stakeholders.
Megan LaRose, Master of Health Administration Candidate, Lauren Shepler, BS Communications, Lauren Hackenberg, Health Program Coordinator, Christine Brown, Clinical Research Assistant, David Ellsworth, MPH
Contact-David Ellsworth-David Ellsworth
Oocyte donation as an aspect of assisted reproductive technologies is an increasingly common practice in the United States. As such, research in the realm of gamete donation has gained interest, but mostly surrounding oocyte recipients and health care providers. Previous studies dive into the genetic screening processes that donors may endure; however, it is not well documented how this information is utilized by donors. Genetic testing results are a piece of information that donors may use for their own reproductive and health management, regardless of the present donation cycle. This study aims to (1) explore the experiences that oocyte donors have with carrier screening and genetic testing, including post-test results disclosure, and (2) discover any resources that were provided in relation to these results.
Elianna Miller, BS; Valentina Caceres, MS, CGC; Dawn C. Allain, MS, CGC; Dr. Amanda Ewart Toland, PhD.
Contact-Dawn Allain-Dawn Allain
2020-2021 Projects
Infant mortality rate is defined as the number of infant deaths per 1,000 live births (Ohio Department of Health,2019). For the past 10 years, the overall infant mortality rate in Ohio has decreased at an average of 1.2% per year (Ohio Department of Health, 2019). There continues to be a significant disparity between infant mortality rates among different races and county of residence in Ohio. Black infants experience an infant mortality rate that is more than 2.8 times higher than white infants, and two-thirds of the infant deaths in the state occur in one of nine Ohio counties (Ohio Department of Health, 2019).Moms2B is an organization with a mission to decrease the rates of infant mortality. Moms2B works with expecting and new mothers living in extreme poverty. Some of the mothers working with Moms2B have developmental disabilities themselves and/or young children with developmental concerns. During the Covid-19 Pandemic, Moms2b converted their programs for expansion and new mothers to a virtual model through Zoom. Baby Zoom was created as an extension of the programs already offered virtually to support mothers and the first year of their baby’s life.
Rohan Patel MD, Chris Steiner, PT, DPT, Alice ByrneMOT, OTR/L, Lori Grisez, PT, DPT, Andrea Witwer, PhD
Contact-Lori Grisez, PT, DPT-Lori Grisez
The COVID-19 pandemic has disproportionately impacted people with disabilities, especially those who require home care supports. People with disabilities, who already experience health care disparities, were further disadvantaged during the pandemic through inaccessible health information, rationing of medical equipment and services, and increased risk of COVID-19 exposure as a result of living in congregate care settings or using home care supports (Sabatello et al., 2020).
Emily Van Gaasbeek, EdM, Cara Whalen Smith, PT, DPT, MPH,CHES, & David Ellsworth, MPH, CHES
Contact-David Ellsworth, MPH-David Ellsworth
Sexual health education is an important part of development for most people. There are several challenges that individuals with IDD face regarding sexual health education, including a lack of training for staff and a lack of adequate materials for those with different needs. Women of reproductive age with IDD are at increased risk of unintended pregnancy without access to education and adequate contraception; however, little information is known about best contraceptive methods for women with IDD. Moms2B is a community-based pregnancy program that provides weekly educational and support sessions and links women in the program to supportive services including education on safe spacing between pregnancies. Challenges imposed by switching to virtual sessions during the COVID-19 Pandemic included limited knowledge on accessing Zoom and limited access to internet-enabled devices. The objectives of this project were to: 1) understand the unique challenges of moms with special needs/IDD and the Mom2Bmodel and 2) determine the status of the evidence of education on safe spacing and contraceptive methods to support safe spacing, specifically for individuals with IDD.
Katara Henderson, Lindsey Welch, Erin Powers, & Kelly Tanner PhD
Contact-Erin Harris-Erin Harris
LEND programs, in fulfillment of the essential educational outcomes in graduate maternal and child health (MCH) training programs, have had a longstanding emphasis on developing skills in providing family-centered care and the ability to work in inter-professional care teams. Children with autism spectrum disorder (ASD) often have complex treatment needs which often require inter-professional collaboration in both assessment and treatment, thus making this an ideal population for the development of learning activities for LEND trainees.
Elizabeth Barnhardt, D.O., Alicia Gonzalez, B.S., DawnC. Allain, M.S., Paula Rabidoux, Ph.D.
Contact-Paula Rabidoux, Ph.D-Paula Rabidoux
Special education schools in Tanzania lack access to knowledge and training for teachers and therapists. One cost-effective and evidence-based capacity building approach to bridging knowledge gaps and increasing self-efficacy of specialists in underserved areas is Project ECHO. The heart of the Extensions for Community Healthcare Outcomes (ECHO) model is its hub-and-spoke knowledge-sharing networks, led by expert teams. Didactic presentations, case-based learning and mentorship are key components to supporting local providers. The Al Muntazir Special Education School (AMSEN) in Dar es Salaam, Tanzania and the Ohio State University (OSU) Nisonger center created an international virtual learning partnership called Pilot AMSEN-ECHO to address educational barriers and increase student outcomes.
Jane Stahl, B.A; Eric Anderson, M.A, BCBA; Arth Bhansali, B.S.; Alice Byrne, MOT, OTR/L; Emily Gazdag, B.A; Kim Karels, S/OTD; Emily Van Gaasbeek, EdM
Faculty: Margo Izzo, PhD; Erin Powers, MSW, LISW-S; Paula Rabidoux, PhD, CCC-SLP; Kelly Tanner, PhD, OTR/L, BCP; Andrea Witwer, PhD Zahida Chagani, Bijal Lal, and the teachers and staff at AMSEN
Contact- Kelly Tanner, PhD, OTR/L, BCP-Kelly Tanner
Transitioning to college and adulthood can introduce novel social challenges, as the demands of school are compounded by larger class settings and reduced structure in class schedules (Tao et al., 2000).These challenges can exist among any college student, including students who identify as neurodivergent (e.g. individuals with autism spectrum disorder, ADHD, specific learning disorder, etc.; Lambe et al., 2019; Khalis, Mikami, & Hudec, 2018). Universities often offer support in the areas of academic, financial, or mental health, but do not typically consider the social support that many might need. This can lead to increased mental health issues, such as anxiety and a sense of isolation (Fisher & Hood, 1987).
Manisha Udhnani, Katara Henderson, Erin Powers, Karen Krainz Edison, Briana Miller, Kerry Perdy, Grant Raymond
Contact-Manisha Udhnani-Manisha Udhnani
Students with intellectual and developmental disabilities traditionally have not had equal access to postsecondary education. Fortunately, progress is being made to address this inequality. The Model Comprehensive Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) was added to an amendment of the Higher Education Opportunity Act (2008). The TPSID program provides grants for the institutions of higher education(IHE), to provide postsecondary education and develop programs for postsecondary students with intellectual disability. The Ohio Statewide Consortium (OSC) TPSID is comprised of six IHE’s engaged in inclusive postsecondary education of192 students between 2015-2020.
Eric J. Anderson, M.A, BCBA
Faculty/Project Leads: Margo Izzo, PhD; Jessie Green, M.Ed., CESP; Andrew Buck, MA
Other contributing personnel: Diane Weinbrandt, PhD; Amy Shuman, PhD
Contact-Jessie Green-Jessie Green
The Centers for Disease Control reported a 50% increase in use of telehealth during the first quarter of 2020. The increase was a direct result of the healthcare system’s response to the COVID-19 social distancing guidelines. The swift response left some patients and clinicians alike unprepared for the switch. Additionally, the nation’s digital divide posed a risk of increasing challenges of health care access for at-risk populations.
Arth R. Bhansali, BS, Tema Krempley, LSW, Sarah Sabo, BSN, RN, CPN, & Stephanie Hosley, DNP, APRN-CNP
Contact-Stephanie Hosley, DNP, APRN-CNP-Stephanie Hosley
2019-2020 Projects
Carly Nelson, B.S., Gili Ornan, B.S.
Contact – Paula Rabidoux – paula.rabidoux@osumc.edu
• Multiple guidelines exist with varying level of detail
• No clear workflow regarding who should discuss genetics
• Collaborative, multidisciplinary team based approach is needed
• Parents are interested in genetics information
• Providers are interested in a CEU on genetics of newborn HL
Cara Barnett, BS, Elizabeth Jordan, MMsc, LGC, Prashant Malhotra, MD FAAP, Allyson VanHorn, MPH, MEd, John Myers, MS
Contact – Dawn Allain – dawn.allain@osumc.edu
various topics promoting a healthy lifestyle with focus on pregnancy or parenting.
Tracey Manz, Dee Adedipe, Michael Valentino, Emma Beaver, Kelly Tanner & Margaret Rosencrans
Contact – Kelly Tanner – kelly.tanner@osumc.edu
supports for individuals with Williams syndrome.
Rebecca Kirchner, M.A., Kristin Dell’Armo, M.A., Dee Adedipe, B.A., Lee Ann Magiera, PT, DPT, Juan Lozano, M.D., M.S., Jennifer Walton, M.D., MPH., Marilee Martens, Ph.D.
Contact – Jennifer Walton – jennifer.walton@osumc.edu
additional barriers. Negative outcomes associated with low SES/high ACE households in Franklin County is what drove the creation ofMoms2B in 2010 by Ohio State University, a program in Franklin County to support pregnant moms and parents of children up to age 1. Given their increased risks, more programming was needed to continue supporting these families once they exit out.
Courtney Sexton, Margaret Rosencrans, & Bethany Frick
Contact – Lori Grisez – lori.grisez@osumc.edu
Children and adults with intellectual and developmental disabilities (I/DD) are often not included in the evaluation of health promotion activities. Research has extensively documented people with I/DD experience health disparities including a high prevalence of secondary conditions such as obesity, hypertension, and gastrointestinal issues. Research has demonstrated that creating health promotion programs, and including the I/DD community in these programs is one way to reduce health disparities. Rising Up Strong was a Summer Health Promotion Program that strived to increase health and wellness knowledge, promote a healthy lifestyle, and encourage autonomy over one’s health in youth with I/DD.
Christine Chilaka, Victoria Chavez, M.A., Jill Crane, M.A., and Susan Havercamp, Ph.D.
Contact – Susan Havercamp– susan.havercamp@osumc.edu
state departments of developmental disabilities. A difficulty hiring and retaining direct support professionals (DSP), sometimes referred to as the Direct Support Workforce Crisis, is one of the most
significant barriers to providing support for individuals with intellectual & developmental
disabilities (ID/DD) nationwide (ANCOR, 2017). Remote support services are a relatively new and growing service that uses technology to support individuals with developmental disabilities who receive support and services (e.g., Homemaker Personal Care services) in the home. For adults with ID/DD who want to reduce the physical presence of staff in their home, remote support technologies can meet a wide range of support needs, including those of people with the most severe health care needs. This study is a novel investigation into the nationwide trend toward the provision, implementation, and use of remote technologies to support people with ID/DD.
Gili Ornan, Jordan Wagner, Marc Tassé, Ph.D.
Contact – Marc Tassé – marc.tasse@osumc.edu
● participants and researchers are equally engaged in the research process
● there is co learning
● participants are empowered through the research process
● participants’ capacity to participate in decisions that influence their lives increases
● balance between the research and action taken to address the problems being examined
Carly Nelson, BS; Madison Piccinich, BSSW; Allison Danko, BS; Ann Robinson, BS; Susan Havercamp, PhD; Andrew Buck, MA
Contact – Susan Havercamp– susan.havercamp@osumc.edu