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.

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, 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

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

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