Disability Studies Commons^™

“When I’M Not Heard, I Feel Like I Don’T Matter”: Advancing Equity In Disability Policy Through Critical Participatory Action Research With People With Intellectual Disability, Cris Marchionne

Student Theses

People with intellectual disability deserve a system that offers flexible, timely, and person-centered support — one that is innovative, sustainable, and holistic in enabling them to live fulfilling lives. This qualitative study, grounded in Critical Participatory Action Research (CPAR), examines how people with intellectual disability experience participation in decision-making within New York State's disability service system. By centering lived experience, the study identifies factors that facilitate or hinder participation in decision-making and examines structural, social, and policy-related barriers that limit agency. Through six focus groups and a Photovoice project with self-advocates receiving OPWDD services, participants described systemic barriers that limited …

Breaking The Cycle: From Victimization To Offending Through The Lens Of Human Services, Colette R. Penalosa

Master of Arts in Human Services

The victim-offender overlap challenges the common view that victims and offenders are separately labeled by recognizing that both groups have experienced significant childhood trauma, physical, emotional, and psychological abuse, neglect, and other adverse childhood experiences (ACEs). Current research implies these experiences can increase the risk of offending as they all influence cognitive and behavioral development while leaving criminal behavior undetermined. The purpose of this capstone is to analyze the relationship between childhood victimization and offending from a human service perspective; analyzing the pathways a victim takes on the road to offending. Research conducted will focus on exploring the victim-offender overlap, …

The Legacy, Importance, & Impact Of Lend: Evidence And Personal Stories, Emily Zalimeni, Emma Stone, Alexa Fortier, Leia Getchell, Nataliya Kloyzner, Asha Abdullahi, Elizabeth Barkoudah, Meghan Chapman, Meredith Close, Heather Engholm, Melissa Levin, Aanchal Sharma, Sarah Sparks, Patricia Rissmiller, Amy Szarkowski, Jason M. Fogler

Developmental Disabilities Network Journal

Leadership Education in Neurodevelopmental and related Disabilities (LEND) programs offer an interdisciplinary/interprofessional training opportunity for medical and allied health professionals, and individuals impacted by disability, including family members and self-advocates. Toward the aim of advocating for the enduring need of LEND and similar training programs, this article centers the voices of a subset of our alumni who have advanced the rights and improved the lives of persons with intellectual and developmental disabilities. These stories are intended to illustrate the key lessons and principles of LEND training, including attending to disability issues in education, growing skills within and between individuals working …

Collaboration Is Key: Improving And Increasing Inclusive Programming Through Partnership, Brandy D James, Elizabeth Sparks, Fiona S Davey, Burris Duncan, Nadine Chau

Journal of Extension

Collaborative partnerships between Cooperative Extension offices and the University Centers for Excellence in Developmental Disabilities are a key opportunity to assess and improve accessible, inclusive programming for the communities they serve. This article outlines such a partnership between local Extension, the local UCEDD, and the local Network for Down Syndrome. It reviews their collaborative process and the resulting pilot program—-an inclusive cooking class. Evaluations of the program and collaborative process demonstrate that the partners' collaboration enabled organizational capacity building and improved service provision for persons with Down Syndrome.

Proceedings Of The 25th International Symposium On Adapted Physical Activity: Easy Read Edition Of The Symposium Proceedings, Catherine Carty, Niamh Cronin, Ian Coleman Horgan, Stuart Dodd, Jack Dowling, Lydia Murphy, Alex Nicholls, Yann O'Carroll, Robbie O'Neill, Meabh Rohan, Brandon Rumian, Diarmuid O'Connor, Eamonn Carroll, Gerard O'Carroll, Jasmin Richter, Mary Shanahan, Aaron Doherty, Sasha Fitzgerald, Katie Lyons, Katie Mahoney, Afeefah Memon, Conor Moriarty, Adrian O'Sullivan, Dylan Shine, Michelle Enright, Phil Mcsweeney, Sophie Casey

Publications

This book is the Easy Read Proceedings of the 25th International Symposium of Adapted Physical Activity (ISAPA 2025), hosted by Munster Technological University under the Patronage of UNESCO. A small number of printed books are available in MTU libraries, and there is a digital version available online on the South West Open Research Deposit.

Advocating For A Care-Based Ethic: Stories Of Pregnancy And Birth From Caregivers Of Children With Down Syndrome, Lydia Ocasio-Stoutenburg, Nayma Sultana Mim

Developmental Disabilities Network Journal

Down syndrome (DS) impacts about 1 in every 640 childbirths in the United States. While quality of life has improved for people with DS, systemic inequities and deficit-based perceptions have persisted throughout history, with material impacts on people with DS and their caregivers. Researchers have documented how caregivers of children with DS have had negative experiences with healthcare providers and genetic counselors, whose biased views about DS translate into subtle and overt pressures. Few studies explicitly focus on the experiences of Caregivers of Color, multilingual families, as well as families with varying economic experiences who have children with DS. This …

Independent Living Skills For The Aging Population Of Adults With Disabilities, Sara K. Fetter Otd, Otr, Jennifer L. Martin Otd, Otr, Cht, Clt, Michele L. Mccarroll Phd, Faacvpr, Acsm-Ccep, Ccrp, Lssbb

Developmental Disabilities Network Journal

Adults with intellectual disability (ID) are living longer and increasingly outlive family caregivers. Strengthening independent living and vocational skills has therefore become a critical public-health priority. Occupational therapy (OT) can address this need through person-centered, community-based programming. This paper describes the co-design, delivery, and preliminary outcomes of a short occupation-based curriculum intended to enhance autonomy and work readiness in aging adults with ID. In partnership with a Dallas, Texas nonprofit, the authors conducted a needs assessment and created an 8-session course rooted in the Independent Living Model and the Occupational Competence Model. The curriculum addressed four domains (physical health, financial …

Disability Rates Among South Asian Immigrants In The U.S. Vary By Country Of Origin, Sobia Mushtaq, Marc A. Garcia

Population Health Research Brief Series

South Asian immigrants are often grouped together in U.S. health data, masking significant differences in health outcomes across subgroups. This brief uses data from the American Community Survey (ACS) 5-Year Public Use Microdata Sample (N = 6,643,738; 2020–2024) to describe disability rates among foreign-born adults from India, Pakistan, and Bangladesh residing in the U.S. The authors find that while South Asian immigrants as a group have lower disability rates than U.S.-born adults, this average is driven largely by Indian immigrants, who make up about 79% of South Asians in the U.S. Among adults aged 65 and older, Bangladeshi immigrants have …

Living Through Misinformation: An Autoethnography Of Autism In Chinese Communities, Joy Lu

Ought: The Journal of Autistic Culture

This critical autoethnographic essay examines how misconception, misinformation, and disinformation shape understandings of autism within Chinese communities and produce tangible harm for autistic individuals and their families. Drawing on lived experience, advocacy work, digital observation, and cross-cultural analysis, it explores how language, medical practices, social media, and professional authority sustain persistent misrepresentation.

The essay argues that this misinformation is not merely the result of ignorance, but a socially reinforced and institutionally supported system of knowledge. By situating personal encounters within broader cultural and structural contexts, it highlights the interconnected roles of language, power, and exclusion in shaping autistic lives. It …

Cross-Cultural Differences Among Children And Youth With Special Health Care Needs: A Mixed-Methods Analysis Of Chinese, Spanish, And English-Speaking Families, Kathleen Mcgrath, Miriam Franco, Amy Morales-Lara, Karen Bonuck Phd, Joanne Siegel

Developmental Disabilities Network Journal

One in five U.S. children has a special health care need, with prevalence rates rising each year. Children and youth with special health care needs (CYSHCN) from immigrant and/or non-English speaking families face heightened barriers to care, unmet health needs, and worsened health outcomes. This mixed-methods study explores cross-cultural similarities and differences among English-, Spanish-, and Chinese-speaking families of CYSHCN across four key domains – (1) the diagnostic process, (2) access to essential services, (3) community integration, and (4) social supports. As part of a statewide, New York State Department of Health funded initiative implemented across three University Centers for …

Assessing The Influence Of Disability Views On Perceptions Of Hearing Aids Among Older Korean Adults, Stasha Lee

Dissertations, Theses, and Capstone Projects

Background

Age-related hearing loss, also known as presbycusis, is highly prevalent among older adults, yet hearing aid adoption remains low, in part due to concerns about stigma and negative social perceptions. This study aimed to examine whether attitudes towards disabilities influence perceptions of individuals wearing hearing aids among older Korean adults. It also explored the potential effects of cultural identity and the age of the individual wearing the hearing aid on these perceptions.

Methods

Ten participants completed the Attitudes and Perspectives on Persons with Disabilities (APPD) questionnaire and rated 8 different images of individuals (one younger male and one older …

Enhancing Ecological Validity In Speech-In-Noise Testing: Integrating Virtual Reality For A Multisensory Audiological Experience, Paulina Lee

Dissertations, Theses, and Capstone Projects

Despite the remarkable advances in hearing healthcare technology, the speech recognition tests used in routine clinical audiological assessment have remained essentially the same for decades.  Monosyllabic word recognition tests in quiet, such as the Northwestern University Auditory Test No. 6 (NU-6; Tillman & Carhart, 1966), have served as the audiology field’s default measure of speech understanding.  Modern speech-in-noise (SIN) tests, such as the QuickSIN (Killion et al., 2004), have emerged, yet they remain auditory-only, leaving an unignorable gap between what clinical tests measure and how patients communicate in daily life.  The present study examined whether pairing a standard SIN test …

Multiple Interest Holder Perspectives Of The True Grit Sci Residential Program: A Mixed Methods Program Evaluation, Keara Mcnair

Seton Hall University Dissertations and Theses (ETDs)

Young adults with spinal cord injury (SCI) face significant challenges during the transition to adulthood, including barriers to independence, community participation, and psychosocial adjustment (Ingimarsdóttir et al., 2023; Zebracki et al., 2010). Current rehabilitation models in the United States prioritize short-term physical recovery and offer limited support for the developmental and contextual needs that shape long-term outcomes after SCI, particularly during transitions from inpatient rehabilitation to the community (Anderson et al., 2024; Bryden & Gran, 2024). Community-based programs may help address these gaps, though few have been rigorously evaluated using implementation science frameworks that attend to health equity, contextual influences, …

The Legacy Of Lead: Lead Exposure's Harmful Effects And Its Concentration In Poc Communities, Layla Sophronia Barber

Student Theses 2015-Present

This thesis examines the disproportionate burden of lead exposure carried by low income, POC communities. The systemic nature of this problem is a symptom of a longstanding legacy of environmental injustice in the United States. Decades of federal neglect are reflected in the higher statistics of lead exposure and poisoning in predominantly black communities. While it is understood that lead exposure poses a serious threat to physical health and early cognitive development, there is a discouraging lack of urgency to remove the toxin from non-wealthy communities. The material covered by this thesis aims to identify and correct the discriminatory social …

Music And Movement For Individuals With Parkinson's Disease, Jordan Butler

The Corinthian

Parkinson’s disease, affecting approximately 10 million people worldwide, causes deficits in fine motor function, speech, and movement, as well as many other secondary symptoms, such as depression (Parkinson’s Foundation, 2020, para. 1). Past researchers have outlined many different studies and interventions regarding Parkinson’s and the effects of various types of music therapy (Andrejeva et al., 2019; Bukowska et al., 2016; Tamplin et al., 2019; Thaut, Rice, Braun Janzen, Hurt-Thaut, & McIntosh, 2019; Zhang, Liu, Ye, Li, & Chen, 2017). This review includes numerous ways that music therapy has benefited, and assisted people diagnosed with Parkinson’s. Vocal practices, auditory stimulation, and …

Exploring Identity Through Clay: A Humanistic Art Therapy Case Study With A Blind Chinese Adoptee, Virginia Jade Leicht

Expressive Therapies Theses

This qualitative case study explored how working with clay in art therapy can help support a blind man’s identity exploration. This paper addresses the problem of many traditional therapeutic approaches within the art therapy realm: They rely too heavily on visual engagement, which can limit the accessibility and opportunities for self-exploration and identity development for those who are blind. The study was grounded in current research and foundational theories based on the humanistic art therapy approach. Clay is considered an accessible medium that engages multiple senses and allows for emotional exploration and meaning making, specifically through tactile and sensory-based engagement …

Measuring Disability Prevalence In Healthcare: A Study Comparing Two Disability Measures, Kristen L. Milefchik, Rhonda K. Dailey, Sharon Milberger

Developmental Disabilities Network Journal

People with disabilities experience significant health disparities and interventions are needed to address them. Measuring disability prevalence is an essential aspect of designing effective, data-driven healthcare strategies. Accurately measuring disability prevalence is challenging given disability is a complex phenomenon, with biological, social, environmental, and cultural components. Previous studies have compared a variety of disability status measurements and found that measurements were incongruent with each other. This study examines the concordance between disability status using two different measures: the nationally recognized American Community Survey (ACS-6) functional difficulty questions and one disability identity question. We used data from 3,621 adult patients participating …

Supporting An Inclusive Summer Camp For Children With Developmental Disabilities Who Use Aac And Their Neurotypical Peers: A Practice-Based Report, Jessica Hicks

Communication Disorders and Occupational Therapy Undergraduate Honors Theses

For my honors research, I completed an internship in an augmentative and alternative communication (AAC) lab at the University of Arkansas. For most of my internship work, I helped support an inclusive AAC summer camp for children with and without developmental disabilities, such as autism, for whom speech does not fully meet their communication needs. AAC includes high-tech tools such as communication apps on tablets that serve as speech-generating devices (SGDs). SGDs were used by many of the AAC summer camp participants with developmental disabilities. In this report, I will provide background information on AAC and developmental disabilities. I will …

Towards Dementia-Inclusive Digital Text-Based Health Information: A Multi-Method Investigation Of Cognitive And Affective Accessibility, Margi Engineer

All Dissertations

This dissertation examines the accessibility, readability, emotional tone, and trustworthiness of digital, text‑based dementia information and investigates how older adults with and without dementia cognitively and affectively engage with such content. It further explores the potential of generative AI to improve dementia information delivery through the development of a domain‑specific retrieval‑augmented generation (RAG) large language model (LLM) chatbot designed to deliver accessible, stigma‑free information. The dissertation comprises four studies using complementary quantitative and qualitative methods. Study I conducts a large‑scale content analysis of 300 medical articles, 35 websites, and 50 blogs, applying readability metrics, LIWC‑based linguistic and sentiment analysis, and …

Fitness For All: Education For Gym Staff Supporting People With Disabilites, Bianca Loor, Mary Jan Greer, Alison Skean

Spring 2026 OTD Capstone Symposium

This capstone project, “Fitness for All: Education for Gym Staff Supporting People with Disabilities,” focuses on improving accessibility and inclusion within community fitness settings through staff education. Individuals with disabilities often encounter barriers in gyms due to limited staff training, lack of confidence, and insufficient knowledge of adaptive fitness practices.

To address this gap, a comprehensive, evidence-based training program was developed and implemented for gym staff at Crunch Fitness Orange Park. The program incorporated occupational therapy frameworks, including the Person-Environment-Occupation (PEO) model and the Occupational Therapy Practice Framework (OTPF-4), to promote inclusive and client-centered fitness practices.

Using a mixed-methods approach, …

Starting With Story, Not Symptom: Narrative Collapse And Cultural Repair In Appalachia, Wayne Coombs Ph.D.

Journal of Appalachian Health

Appalachia’s opioid crisis reflects uneven burdens, especially in distressed coalfield counties, and it cannot be solved by symptom tracking alone. This commentary argues for a narrative shift, starting with story and cultural repair alongside clinical care. Narrative collapse is defined here as the loss of shared, dependable public meaning across groups, not the absence of storytelling in families, churches, and recovery circles. Trauma science suggests that chronic threat reshapes nervous systems across generations, making safety a prerequisite for renewed trust. Drawing on narrative identity research, the piece proposes peer story work as infrastructure that can reduce shame, support treatment engagement, …

Benefits And Barriers: Csd Faculty Attitudes Toward Student Accommodations, Erika Squires, Lori A. Pakulski, Celeste Domsch

Teaching and Learning in Communication Sciences & Disorders

Purpose: Academic accommodations in Communication Sciences and Disorders (CSD) have been explored via university websites and surveys of clinical educators, but little is known about CSD faculty attitudes toward accommodations in higher education. This study explored the types of accommodations faculty report and the benefits and barriers they encounter in doing so.

Method: A cross-sectional, mixed-methods study design was used to survey CSD faculty and instructors about the types of accommodations used by CSD students and the benefits and barriers associated with accommodations. Descriptive statistics were used to summarize participants’ responses. Qualitative analyses were used to identify themes on benefits …

Promoting Participation In Adults With Intellectual Disabilities (Id) Through Inclusive Theatre Education And A Professional Theatre Partnership, Lila R. Clark

Entry-Level Occupational Therapy Doctorate - Doctoral Capstone Symposium

Intellectual Disabilities (ID) are characterized by a deficit in intellectual and adaptive function that affects between 1% and 3% of the general population (Patel et al., 2020). As young people age out of the school system between 18 and 21 years of age, opportunities for meaningful participation in their community drop drastically (Codd & Hewitt, 2020). This lack of opportunity can lead to decreased overall mental health and quality of life, possibly explaining why adults with ID are disproportionately affected by mental illness when compared to their typically developing peers (Hall, 2017; Pinals et al., 2022). The purpose of this …

Start With What They Know: Using Motivational Interviewing To Create A Cooking Class, A Culinary Intervention For Teens (Autistic And Non-Autistic), Gwendolyn S. Tedder

LEND Trainee Presentations

Autistic teens are at greater risk for having heart disease and diabetes as adults. Food particularity, sensory issues, fixed mindset, and anxiety over trying new things can slow down their interest in preparing food for themselves. Nurturing basic cooking skills and gently encouraging trying new foods would provide more nutritional options to teens as they move into adulthood. A cooking class preceded by Motivational Interviewing (MI) developed further interest in preparing food afterward in teens, both autistic and non-autistic, and in trying new foods for autistic teens with food concerns.

Effects Of Ndbi With Just-In-Time Programming Of Vsds On Communication Of Children With Asd, Jenna M. Rogers

College of Education and Human Sciences: Dissertations, Theses, and Student Research

Autism Spectrum Disorder (ASD) is a prominent neurological and developmental disability that often requires communication support, such as Augmentative and Alternative Communication (AAC). Visual Scene Displays (VSDs) are an AAC support that directly immerses in the user’s life, using images from real environments the user has or may experience. Naturalistic Developmental Behavioral Intervention (NDBI) is an evidence-based approach to early intervention that targets social communication during naturalistic routines, including those who rely on AAC support to communicate. Despite recent research indicating that combining NDBI and AAC is a promising approach (Pope et al., 2024), no studies to date have examined …

Transformational Leadership In Higher Education, Dr. Jewel Hale, Jr., Kristi Apostel

Tapestry: Journal of Research in Education

A crisis can highlight the critical need for resilient leadership within higher educational settings. Educational leaders encounter extraordinary difficulties, ranging from different learning options to prioritizing the well-being of both staff and students, necessitating flexible and innovative methods. By exploring how school leaders apply transformational techniques in actual educational environments, this article addresses the impact of the four I’s of transformational leadership, idealized influence, inspirational motivation, intellectual stimulation, and individualized consideration, on building educator resiliency, sustaining school effectiveness, and promoting student achievement in higher education.

Fierce Leadership-Perspectives Of Black Women Educational Leaders: A Transcendental Phenomenological Study, Janice Taylor, Dianne Reed

Tapestry: Journal of Research in Education

The authors of this transcendental phenomenological study aimed to describe the lived experiences of Black women based on their perceptions, values, and beliefs about the complexities of leadership and the kind of leadership required to succeed in their respective roles, as educational leaders. This study was framed by the adaptive leadership theory. Adaptive leadership recognizes the need for leaders to stay flexible and resilient in fast-paced environments (Nelson & Squires, 2017). The three Black women leaders in this study were fierce adaptive leaders. The information acquired from this study is significant and highlights how Black women educational leaders developed the …

Research Literacy And Research Production Skills As Core Competencies In Leaders, Kk O'Byrne

Tapestry: Journal of Research in Education

No abstract provided.

Evaluating Sensory Sensitivities Among Children With Autism Spectrum Disorder In An Adaptive Gymnastics Program, Aicha Kaouss, Bradley Eppinger, Austin Ebbrecht, Kailash Ram, Kaitlin P. Hardy Md

Knowledge and Creativity Expo

Introduction: Children with autism spectrum disorder (ASD) participate in physical activity at lower rates than their neurotypical peers1. Sensory sensitivities, reported in approximately 75–95% of children with ASD, may contribute to this disparity2. Gymnastics environments involve bright lighting and loud noise, which can precipitate sensory overload. The impact of specific sensory features on participation in adaptive gymnastics remains underexplored.

Methods: A cross-sectional study recruited caregivers of children aged 3–12 years with an ASD diagnosis enrolled in the EVMS Adaptive Gymnastics Program. Caregivers completed the Sensory Experiences Questionnaire–Third Edition (SEQ-3)3 and supplemental survey items on Redcap which assessed environmental triggers and …

Addressing Health Inequities For People With Intellectual And Developmental Disabilities In The Hospital Through Partnerships In Nurse Training, Suzannah Iadarola, Amanda Laprime, Samantha Hochheimer, Tabby Anvari, Carrie Baker, Jacqueline Goodman

Developmental Disabilities Network Journal

People with intellectual/developmental disabilities (IDD) deserve the same access to quality healthcare yet are at increased risk of medical and/or psychiatric conditions as compared to the general population. Patients with IDD have less health satisfaction, shorter life expectancy, less access to preventative care, higher chronic health conditions, overuse of certain medications, and increased mortality. This population and their caregivers report high levels of dissatisfaction with emergency/inpatient care. Nurses also express frustration with lack of training, limited resources, and competing priorities.

We developed the Advancing Supportive Care through Education for Nurses on Disability (ASCEND) Program, to build the capacity of inpatient/Emergency …