Leadership Projects

Disability Rights Ohio (DRO) is a nonprofit organization whose mission is to protect and support the human, legal, and civil rights of Ohio’s people with disabilities ( PwD ). For nearly a decade, DRO has served as Ohio’s Protection and Advocacy (P&A) system and is driven by a Board of Directors composed of advocates of all kinds, including parents, siblings, friends, and self advocates. Ohio’s population of PwD in Ohio is expected to decrease by just over 3% by 2030 (Mehdizadeh & Kunkel, 2014), a trend that is in direct opposition to general Ohio population trends over that same time span. As Ohio’s total proportion of PwD slowly wanes over the next decade, ensuring the broad and far reaching impact of the advocacy and support initiatives spearheaded by DRO become even more crucial. The aim of this project was to assess the relative volume, geographic reach, and impact of DRO’s various activities over the past 5 years (2014-2019). With this information, DRO can gain a deeper understanding of the reach of their efforts, and inform them as they decide where to open an additional administrative office.

Carly Nelson, B.S., Gili Ornan, B.S.

Contact – Paula Rabidoux – paula.rabidoux@osumc.edu

Aim 1: Evaluate provider practice patterns, beliefs, and knowledge of the role of genetics in the medical diagnosis of newborn HL. Aim 2: Assess parent experience and knowledge of the role of genetics in the diagnostic process for their newborn with HL. Conclusions were found to be the following • Providers in Ohio are most compliant with the basic groundwork of the AAP JCIH guideline
• 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

Moms2B was founded in 2010 by The Ohio State University to address disparities in IM and social determinants of health by empowering and supporting pregnant women to deliver full term healthy babies. Moms2B consists of free weekly 2 hour sessions for pregnant women and mothers of children under 1 years old at 8 locations in Columbus with highest rates of IM. Each session consists of a nutritious meal, prenatal care, access to resources and available support services, and education on
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

Williams syndrome (WS) is a microdeletion disorder affecting ~1:10,000 individuals, caused by a deletion of 26 28 genes on 7q11.23, with the ELN gene associated with most common medical problems. Individuals with WS have a constellation of medical and neurodevelopmental features, including dysmorphic facies, heart defects and intellectual disability. Research has been conducted around characteristics of adaptive behavior, however little is known about expected developmental milestones in early childhood, and relationship between medical issues and developmental outcomes, such as motor skills, language abilities, and adaptive behavior. The objective of this project is to create a data registry of individuals seen in the Williams Syndrome Clinic at Nationwide Children’s Hospital, who will be followed across time. This project will also provide a guide for potential future treatments, interventions, and
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

Families in low SES communities in Franklin County in Ohio face a plethora of issues such increased levels of violence, limited resources, and higher infant mortality (IM) rate. Ohio ranked 39 th in the country for IM in 2015 (Ohio Department of Health). The IM rate for black babies is 2.5 times that of white babies in Franklin County. Parents with disabilities in thesecommunities are at greater risk and face
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

The benefits of health promotion activities in the school setting have been significantly documented.
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

In 2018, then Ohio governor John Kasich declared Ohio a Technology First State, placing the incorporation of technology as a priority in delivering services through the Ohio Department of Developmental Disabilities (DODD). Since then more and more states have identified themselves as Technology First States, enacting similar orders that reflect this major perspective shift among
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

Characteristics of a participatory action research (PAR) approach with participants who have intellectual disabilities (Israel, Shulz, Parker, & Becker, 1998).
● 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

The population of children negatively affected by the U.S opioid epidemic continues to increase, along with the incidence rate of neonatal abstinence syndrome (NAS) and exposure to adverse childhood events, including trauma. Professionals in the early childhood workforce educated on how the interaction of opiate exposure and trauma can affect the development of young children can better support children and families of the opioid epidemic. A training initiative was developed to train early childhood practitioners in current and emerging knowledge and evidence-based promising practices. The curriculum is specifically related to screening, monitoring, and care for children diagnosed with Neonatal Abstinence Syndrome (NAS) and Neonatal Opioid Withdrawal Syndrome (NOWS), or children who are suspected of being impacted by opioid use and related trauma exposure. The training utilizes the Project ECHO® framework, which is an interdisciplinary model that allows professionals from a wide variety of settings to collaborate and share specialized knowledge with one another. It includes a central HUB team of experts, consultants/presenters and participants working in early childhood settings.

Jessy Thomas BA1, Andrea Witwer PhD1, Michelle Roley-Roberts PhD1, Jenna DeCarlo BA1, Riane Ramsey BA1, Stephanie Weber PsyD2, Pam Williams-Arya MD2, Anne Tapia MSW, LSW2, Leah Benjamin BA2, Lydia Wall MSW, LSW2, Canyon Hardesty MS, CHES2, Eric Moody PhD3, Sandy Root-Elledge MA3
The Ohio State University Nisonger Center 1, Cincinnati Children’s Hospital Medical Center 2, Wyoming Institute for Disabilities 3

Contact – Andrea Witwer – andrea.witwer@osumc.edu

The U.S. opioid epidemic contributes to a growing population of children experiencing negative impacts, including increased rates of neonatal abstinence syndrome (NAS) and risk for adverse life events (Patrick et al., 2012, Saia et al., 2016). The early intervention system is underprepared to adequately assist these vulnerable children. An online training module on best practices for NAS, developmental monitoring and referral, and trauma-informed care in the state of Ohio was created. Pre- and post-training knowledge and characteristics, including county and knowledge of adverse childhood events (ACEs), were collected for 1,932 providers. There was a significant increase in provider knowledge from pre-test (M=10.17, SD=1.94) to post-test (M=11.26, SD=1.92), t(1906) = -24.59, p<.001. There were no significant differences in post-training knowledge across provider characteristics and learning was not associated with the number of ACEs reported for child cases. Providers in counties with higher opioid death rates showed significantly less gains in their knowledge at the post-test compared to counties with lower death rates, F(5,1868)=2.57, p=.025. Online-training programs appear to hold promise for closing gaps in the early intervention system for children impacted by the opioid epidemic. Special attention should be given to counties particularly impacted by high rates of opioid-related deaths.

Michelle Roley-Roberts PhD1, Jenna DeCarlo BA1, Riane Ramsey BA1, Hanein Edrees MD2, Jessy Thomas BS1, Felicia Foci MSOT2, Jennifer Walton MD, MPH1, Stephanie Weber PsyD2, Andrea Witwer PhD1
The Ohio State University Nisonger Center 1, Cincinnati Children’s Hospital Medical Center 2

Contact – Andrea Witwer – andrea.witwer@osumc.edu

Opioid related deaths tripled in the United States between 1999 and 2014. Parental substance use disorder impacts children, including an increased risk for adverse children experiences (ACES). ACEs are associated with later physiological, emotional, and behavioral problems. In utero exposure may lead to Neonatal Abstinence Syndrome (NAS), a group of conditions caused when a baby withdraws from certain drugs after prenatal exposure. Our goal was to build on a successful asynchronous online training project: The Impact of Ohio’s Opioid Crisis on young Children, created in 2018. Building on this work, we developed curriculum for early childhood professionals to build knowledge and skills in this area. We are assessing the feasibility and effectiveness of the ECHO model, an interactive online training model.

Leah Benjamin BA2, Hannah Dinnen MA, MEd2, Lydia Wall MSW, LSW2, Jenna DeCarlo BA1, Riane Ramsey BA1, Michelle Roley-Roberts PhD2, Jessy Thomas BS1, Anne Tapia MSW, LSW2, Steph Weber PsyD2, Pam Williams-Arya MD2, Andrea Witwer PhD1
The Ohio State University Nisonger Center 1, Cincinnati Children’s Hospital Medical Center 2

Contact – Andrea Witwer –andrea.witwer@osumc.edu

Historically, individuals who have a disability benefit less from public health programming. The Ohio Disability and Health Program (ODHP) and the Creating Healthy Communities (CHC) Program at the Ohio Department of Health established a partnership in 2017 with the hopes of mitigating this disparity. In this analysis ODHP, along with a current Ohio State LEND graduate fellow, evaluated the impact of this partnership on 23 counties across the state of Ohio. This review is a continuation and refinement of last year’s LEND project. In 2018, trainees created a list of inclusive words and completed a systematic word search of the 2017 Creating Healthy Communities Program Narratives. This year, this list of words was expanded, and the review process was refined to more accurately portray disability inclusion in each of these communities. While last year’s inclusivity was measured by word count, this year it was measured by activity. Each word was counted once per activity. These inclusive projects were then grouped into one of eight of the following categories: Nutrition, Physical Activity, Built Environment, Policy, Engagement, Partnership, Independence, and Adaptive Equipment. The activities were categorized based on their stage in the process. Despite the refined, conservative approach, our analysis revealed a significant level of disability inclusion in the majority of the counties. The themes that were most prominent in the regions included built environment, engagement, and partnerships. The counties that were and are engaging in the most inclusive activities included Adams, Allen, and Cincinnati. The level of funding in counties was not found to have an impact on the amount of inclusive initiatives in the area.

Natalie Ritter BA, David Ellsworth MPH, CHES, Cara N. Whalen Smith PT, DPT, MPH, CHES

Contact – David Ellsworth – david.ellsworth@osumc.edu

Literature suggests that resiliency may play a crucial role in the overall health of parents and families of children with developmental disabilities. Current OCALI employees and former LEND trainees initiated this analysis to investigate how resiliency is built and measured in families who have children with developmental disabilities. Current LEND trainees completed a scoping review of existing literature that followed the guidelines set by Tricco et al. in Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) (2018). An operational definition of resiliency was agreed upon and applied throughout the review. For the sake of this review, resiliency is a family’s ability to respond and adapt to disruptive life challenges in a strengthened, resourceful, and hopeful manner. An initial search resulted in 93 studies of relevance. Titles and abstracts were reviewed by 4 trainees for inclusion and after screening, 38 studies were included for full-text review. These 38 studies were divided among trainees and each full-text was reviewed to determine inclusion. The consensus was ultimately reached through discussion with all reviewers. The final review included 17 studies. Five specific themes were identified relating to resiliency: characteristics of resiliency, protective factors, social supports, measures of resiliency, and interventions to promote family resiliency. Specific information about these themes was summarized by reviewers and presented to stakeholders.

Grace Reifenberg OTD, OTR/L, Soo Youn Kim MA, Julia Mazzarella PT, DPT, Natalie Ritter, BA, Kelly Wilton BA

Contact – Julia Mazzarella – julia.mazzarella@osumc.edu

Workplace wellness programs are frequently offered by employers as a way to decrease health care costs, employee absenteeism, and disability claims by encouraging healthy behaviors. Daily service providers (DSPs) often serve as unintentional role models for the individuals they work with, which includes the transference of health behaviors. Creating policies that create space for health promotion in daily schedules, programming, and leisure time can engage both employees and individuals with disabilities in health education opportunities and the adoption of healthy habits. Through reviewing current literature and surveying current DSPs, we describe the process of developing a list of workplace wellness recommendations intended to elicit these potential health and wellness benefits for both providers and their clients with disabilities.

Donna E. Green BA, Jesse Strickler BA, Ann Robinson BS

Contact – Ann Robinson – ann.robinson@osumc.edu

Newborn screening for Krabbe disease, a rare, lysosomal storage disorder resulting in the demyelination of nerve cells and early death, began in the state of Ohio in 2016. Krabbe disease became the first, and only condition on the newborn screening panel, to be mandated by the state despite multiple expert panels and healthcare providers voicing that screening for the condition is inappropriate at this time. Healthcare provider opinions have been documented, but very few researchers have sought out parental opinions of Krabbe newborn screening. The aims of this study were to (1) determine common themes regarding parental experiences with false positive newborn screening results for Krabbe disease, (2) ascertain parents’ opinions of Krabbe newborn screening and (3) assess the beliefs and attitudes of parents whose infant received a false positive Krabbe result.

Laiken Peterson BS1, Amy Siemon MS, LGC2, Kim McBride MD, MS2, Dawn Allain MS, LGC1
The Ohio State University 1, Nationwide Children’s Hospital 2

Contact – Dawn Allain – dawn.allain@osumc.edu

People with disabilities have largely been unrecognized as a population for public health attention. Individuals with disabilities represent about 20% of the U.S. population, meaning a significant portion of our population is not included in the creation of public health policies. This sizable population experiences differences in healthcare outcomes that relate to higher rates of unmet healthcare needs. As a group, this population has more chronic diseases and conditions, is more likely to smoke than the general population and has an increased risk of becoming obese. Public health has an opportunity and responsibility to improve and promote health equity for people with disabilities. By not including people with disabilities in public health work, 1/5 of our population is left out of the discussion. It is critical to consider this population to decrease healthcare costs and improve health outcomes.

Kim Baich, David Ellsworth MPH, CHES

Contact – David Ellsworth – david.ellsworth@osumc.edu

Recent research has indicated that individuals with intellectual and developmental disabilities (IDD) experience healthcare disparities. People with disabilities struggle to access and receive high quality healthcare services. Medical student education in IDD may be one solution to this problem. The LEND program advanced the lectures, panels, and clinical trainings on patients with disabilities for OSU medical students. We specifically focused on a simulated clinical encounter with volunteer patients with disabilities, and an Autism Spectrum Disorder panel aimed to communicate the lived experience of individuals and families with ASD.

Kelly Rich BS1, Jesse Strickler BA1, Braden Gertz1, Allison Macerollo MD2, Jennifer Walton MD, MPH1&2, Jill Crane MA1, Todd Lash MA2, Ann Robinson BS1, Jessica Prokup, BS1&2, Susan Havercamp PhD1
The Ohio State University Nisonger Center 1, The Ohio State University College of Medicine 2

Contact – Jennifer Walton – jennifer.walton@osumc.edu

“A Day in The Life” Leadership project paired two LEND trainees with families in our community with children with neurodevelopmental disabilities.  These families have volunteered to spend time with the trainees, allowing them into their homes and into their lives. The trainees got to see a small slice of everyday life for families with children with disabilities. The goal of the project was to develop empathy and growth in trainees, so that they can carry these lessons into clinical practice in order to increase emphatic and feasible recommendations in their future practice. The two LEND trainees attended several home and community outings with their family throughout the year. They reported on strengths of the families, which included perseverance, family dynamic, resiliency, and social support. They also identified specific challenges for their families, including mental health, sibling relationships, and fear of the future.

April Horstman BS, Kasey Hageman BS, Ellen Cook, Linda Rittenhouse

Contact – Ellen Cook – tamncook@gmail.com

The project focused on the articulation of the role of the interprofessional team in managing complex needs of children with multiple chronic conditions and the needs of their family. Through literature review and observational experiences with the Complex Care Clinic a Nationwide Children’s Hospital, our main objective was to develop an appreciation for the multiple aspects that families have to consider when caring for a child with multiple chronic conditions in the home environment. 

Katherine Ratino BA, Bethannie Golden BS, Jamie McGrath BSSW LSW, Stephanie Hosley MS RN CPNP, Dr. Deborah Steward PhD RN

Contact – Stephanie Hosley – hosley.8@osu.edu

Overdoses are on the rise nationally. Emerging state initiatives have focused on reducing overdose deaths and the high volume of children in foster care. Children with prenatal exposure and opiate-related traumatic stress are being referred into Early Intervention (EI) programs due to behaviors and delays that are developmental in nature. Training was needed on how to work with these children. Interdisciplinary teams at two medical centers collaboratively developed a web-based training. The team conferenced weekly to discuss content, project needs and next steps. Content development began with literature reviews of the opioid epidemic, addiction, neonatal abstinence syndrome, traumatic stress, and child development. The team consulted with content experts, stakeholders, and community members to refine the content. Video recordings were conducted with foster parents, youth, childcare and EI providers, OBGYN/neonatologists, occupational therapists, and addiction experts. The team identified an online platform for dissemination. Content and videos will be edited and incorporated into platform. This presentation addressed lessons learned including needing technological expertise to streamline production efforts, using snowball effect to solicit videos and advertise training, and navigating work styles, expertise, and personal goals among interdisciplinary team.

Michelle E. Roley-Roberts, PhD, Felicia Foci, MSOT, Michael Storts, BA, Brooke Nightingale, BS, Hanein Edrees, MD, Jennifer Walton, MD, MPH, Andrea Witwer, PhD , Stephanie Weber, PsyD.

Nisonger Center LEND Program, Department of Psychiatry & Behavioral Health, The Ohio State University Wexner Medical Center, Columbus, Ohio 

Cincinnati LEND Program, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio

Contact – Andrea Witwer – andrea.witwer@osumc.edu

Efforts have been made to identify early signs of autism spectrum disorder (ASD) across a wide variety of developmental domains; however, there is debate in the field about which of these domains, and which specific behaviors, may best predict a later ASD diagnosis. The objectives of this study were: 1) to determine whether there is clinical data in the electronic medical record (EMR) that documents early signs of ASD, and 2) to determine whether there are critical items on the Bayley Scales of Infant and Toddler Development, 3rd ed. (Bayley-3) that predict ASD diagnosis later in life for the high-risk neonate population.

Maria Baldino MS, OTR/L, Helen Carey PT, DHSc, Nicholas Kelly PT, DBT, Karen Ratliff-Schaub MD, MBOE, Kelly Tanner PhD, OTR/L

Contact – Helen Carey – helen.carey@osumc.edu

Throughout history people with disabilities have been overlooked and disregarded in the scope of state and community based efforts to improve population health. This has led to individuals to benefit less because they are not taken into consideration when these programs are being planned for a variety of reason. A partnership was set up to combat this problem. The Ohio Disability and Health Program and the Creating Healthy Communities Program (CHC) at the Ohio Department of Health (CDC DP13-1305 administers) gave technical assistance to twenty three community based creating healthy communities awardees in the state of Ohio. This partnership focused on giving technical assistance for a fourteen month period. The Ohio Disability and Health Program sought to determine the impact of this partnership and technical assistance provided to CHC awardees.

Susan M. Havercamp, PhD, FAAIDD, David Ellsworth MPH CHES, Sabrina Moxcey BA, Jamie McGrath BSSW LSW, Ann Weidenbenner MS RDN LD

Contact – Susan Havercamp – susan.havercamp@osumc.edu

Remote supports, previously known as remote monitoring, are an Ohio Medicaid Home and Community-Based Service waiver service that combines technology and direct care to support people with developmental disabilities. The University Support in Technology Evaluation and Development project (Technology Project) aim is to investigate the role of technology, including remote supports, plays in the lives of people with developmental disabilities and their families, and improve the future experience and benefit of remote supports services.

Minje Kim, MA, Marc J. Tassé  PhD, Jordan B. Wagner

Contact – Marc Tassé – marc.tasse@osumc.edu

Recent research has indicated that individuals with intellectual and developmental disabilities (IDD) experience healthcare disparities. Medical student education has often been cited as a solution to reducing said disparities. The Educating Medical Students committee works to integrate IDD education in The Ohio State University College of Medicine (OSUCOM) curriculum. Third year medical students attend a self-and parent-advocate panel on autism spectrum disorder and participate in a simulated patient encounter. These activities give med students experience in working with individuals with IDD and understanding of health and other service needs. LEND trainees assisted with both events. Tasks included reaching out to participants, coordinating with the medical staff and faculty, monitoring the panel, and leading discussion. Medical student satisfaction with the program was 4.15 out of 5. The project had the biggest impact on the medical students’ self-reported knowledge about how make a patient with a disability feel welcome and comfortable during an exam, understanding of the challenges that people with disabilities face during a doctor’s visit, and perceived ability to provide better care for the autism population. Additionally, the committee worked on a grant to expand the IDD curriculum, which was accepted.

Sabrina Moxcey, B.A., Wendy Scott, B.S. Colleen Tullis, M.Ed, Ann Robinson, Susan M. Havercamp, PhD, FAAIDD, Karen Ratliff-Schaub, MD, MBOE

Contact – Susan Havercamp – susan.havercamp@osumc.edu

Author: Margo Izzo, PhD, Dennis Cleary, OTD, MS, OTR/L, Andrew Persch, PhD, Rebecca Weishaar, BS, Leah Fein, BS, Kelly Epperson, BS

TOPS students will participate in a stress management seminar and subsequent interventions targeted at identifying and reducing stress symptoms associated with academics and employment. This project is designed for two purposes: (1) to increase student awareness of stressful situations and stress symptoms and (2) to improve their ability to utilize coping strategies to reduce stress. This project is intended to be a supplement to current TOPS curriculum for selected students to enhance their socio-emotional behaviors in relation to academic and employment settings. This program will utilize a non-randomized methodology to determine how the stress management intervention impacts perceived stress and employment-related abilities. Student satisfaction with the stress management intervention will be shared.

Contact – Margo Izzo – margo.izzo@osumc.edu