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 …

A Critical-Constructivist Grounded Theory Exploration Of The Mental Health Experiences Of Individuals With Intellectual Disabilities In Post-Secondary Settings, Alyssa L. Decker

Dissertations, 2020-current

Individuals with intellectual disabilities (ID) now have access to higher education, often through inclusive post-secondary education programs (IPSE), to increase employability and quality of life. IPSE programs, historically, have provided academic and life skill support and not mental health support within programs’ curricula. A recent review of IPSE programs reveals that if mental health services are included, they are often accessed through university health services. Transitioning from high school to college induces high levels of stress, which can exacerbate underlying mental health conditions. Mental health care is defaulted to an already overburdened college counseling center without the knowledge and skills …

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 …

Differentiating And Accommodating Ocd And Anxiety In Mathematical Contexts, Madeline F. Gavares

Interdivisional Studies Summer Fellows

Students in mathematics classrooms may experience emotional and cognitive challenges that affect how they engage with coursework and assessments. While math anxiety has been widely documented, less attention has been given to how obsessive-compulsive disorder (OCD), particularly checking behaviors, may influence students’ experiences in math settings. This study explores how students who report math anxiety and those who report OCD symptoms describe their engagement with math tasks and test-taking. Drawing on survey and interview data from students and teachers, this study examines how these experiences are articulated and perceived in academic math contexts, rather than evaluating ability or outcomes. By …

Access Intimacy In The Feminist Classroom: Co-Creating Course Policies, Expectations, And Access Measures As Feminist Disability Praxis, Krystal Cleary

Feminist Pedagogy

In this essay, I outline an activity to foster access intimacy (Mingus, 2011) in the feminist classroom through students’ co-creation of course policies, expectations, and additional access measures. This activity transforms the classroom into a praxis laboratory wherein students analyze the normative structures that shape their hyperlocal classroom context and practice building environments characterized by interdependent solidarity rather than atomized competition. As feminist disability praxis, this activity centers the knowledge of disabled, chronically ill, and neurodivergent scholars and students; in doing so, it customizes the classroom to a diversity of learners and builds adaptability for responding to unforeseen challenges into …

“Pride Runs Through Our Veins”: A Qualitative Investigation Of Black Parents’ Ethnic-Racial Socialization Practices Among Black Youth With Disabilities, Nicole A. Telfer, Danielle J. Allen, Noreen Yazejian, Iheoma U. Iruka

Developmental Disabilities Network Journal

While ethnic-racial socialization (ERS) practices are crucial in Black/African American families, little is known about ERS practices in Black families of Black children with disabilities. In the current study, we investigated ERS practices among Black/African American parents’ who are raising children with disabilities and how this may influence children’s outcomes. A total of N = 8 Black/African American parents were invited for semi-structured interviews to explore more deeply their ERS practices among their children with disabilities. Several themes emerged from the data, which highlights ERS practices from a DisCrit lens, as well as the overall experiences of parents and their …

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 …

Engaging Immigrant Families Of Children With Disabilities: Recommendations For Practitioners, Robai N. Werunga, John William Mckenna, Rocio Rosales

Developmental Disabilities Network Journal

Family involvement is essential for positive school outcomes. Yet research suggests that family engagement for students with disabilities may be marked by conflict. Furthermore, creating an environment that promotes active engagement for immigrant families may be challenging. In this paper, we synthesize existing research, legal guidance, and community-engaged insights to present four practice-oriented recommendations for educators and practitioners working with immigrant families of children with disabilities. Grounded in Hans and Love’s stages of immigrant family engagement, these recommendations aim to support meaningful and culturally responsive participation in special education processes.

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 …

From Access To Success: Addressing Barriers For Students With Disabilities In Higher Education, Melissa Wood

Inquiry: The Journal of the Virginia Community Colleges

Over the past several decades, enrollment of students with disabilities in higher education has steadily increased. However, disparities in retention and degree completion persist. Although federal laws such as the ADA and Section 504 of the Rehabilitation Act guarantee equal access, many students continue to encounter barriers that affect their academic experience. These challenges are often more pronounced in community colleges, which serve diverse populations and often operate with limited resources. This paper examines two key barriers and highlights best practices that institutions can implement to improve accessibility, strengthen support systems, and promote persistence and success for students with disabilities.

Reclamando Corazón Y Voz: Latinas Speak Their Truth Through Plática As Resistance In California Community College Learning Disabilities Assessments, Maricela Becerra

Dissertations

Although California Community Colleges (CCCs) offer learning disability (LD) assessments to determine eligibility for academic accommodations, for Latina students navigating converging forces of race, gender, language, citizenship, and ableism, these assessments often surface unspoken histories of harm. This study advanced Chicana feminista DisCrit (CFDC), extending disability critical race theory through Chicana spirituality and cultural intuition to examine possibilities when an educadora situates assessments in a plática grounded in consideración—respectful, relational, and unhurried care.

Rooted in Chicana feminist pláticas methodology and authored from the positionality of a disabled Latina scholar–practitioner, this qualitative decolonial dissertation explored how Latina students reflected on …

Who Gets To Be Taken Seriously? Three Atypical Scholars Navigate Doctoral Education At The Intersections Of Race, Neurodivergence, And Veteran Identity, Sr. Richard De La Garza

Dissertations

As a first-generation, neurodivergent, Mexican American/Chicano veteran, I entered the University of San Diego's doctoral program having had experiences that most institutional intake processes would label as risk factors. The Findings chapter of this dissertation begins by describing those experiences—not as a confession, but as the foundation for a systematic inquiry into how doctoral legitimacy is produced, withheld, and defended. The description of my life experiences is followed by a discussion of the doctoral journeys of two other study participants who also were atypical doctoral candidates.

The central argument being advanced is this: What higher education calls "fit," "rigor," and …

An Equity-Based And Culturally Responsive Bill Of Rights For Early Childhood Students Of Color With Exceptionalities, Evette Simmons-Reed, Michelle Frazier Trotman Scott, Gloria Tardash, Mildred Boveda, Donna Y. Ford

Perspectives on Early Childhood Psychology and Education

The COVID-19 pandemic exacerbated existing disparities in early intervention (EI) and early childhood special education (ECSE) services for culturally and linguistically diverse (CLD) disabled children, exposing critical gaps in access, services and support. systemic inconsistencies in implementation, training, and funding, remain barriers limit opportunities for CLD students to benefit, despite the aims of the Individuals with Disabilities Improvement Act (IDEA). To address these inequities, this manuscript proposes an expanded and updated Culturally Responsive Equity-Based Bill of Rights for EI and ECSE. Building upon Ford and colleagues' (2018) work, this revised document extends protections to children aged zero to five, emphasizing …

Guest Editor's Introduction: Methodological Innovations For Advancing Early Childhood Educational And Psychological Research, Anthony Mangino Ph.D.

Perspectives on Early Childhood Psychology and Education

The goal of this special issue is to provide you, the inquisitive reader and developmental scientist, with some of the methodological tools to aid in augmenting your analytic capacity.

Strength In Collaboration: A Unified Dd Network Approach To A Statewide Needs Assessment, Emily R. Lanchak, Julie Lounds Taylor, Bruce L. Keisling

Developmental Disabilities Network Journal

To strengthen collaboration, improve efficiency, and reduce respondent burden, the Tennessee Developmental Disabilities (DD) Network launched a first-of-its-kind integrated statewide needs assessment. This two-year, mixed-methods effort gathered input from nearly 1,500 individuals with disabilities, family members, and professionals through an accessible survey and follow-up focus groups. Tennessee DD Network partners co-developed measures, coordinated outreach efforts, and pooled resources to ensure broad representation and inclusive participation across communities statewide. Community members with lived experience were involved throughout the process, helping to ensure materials were usable, relevant, and respectful of diverse needs. The resulting shared dataset provides a foundation for each organization’s …

Gospel Reception And Response In Children With Profound Cognitive Disabilities, Reagan Lewis

Senior Honors Theses

This study attempts to build a bridge over a gap in research regarding how to observe children with profound cognitive disabilities’ understanding of the gospel, also incorporating information about ministry structure, caregiver responsibility, and methods for presenting the gospel. This qualitative study was interview-based: four ministry leaders representing three disability ministries were interviewed, and then a focus group was conducted to discuss further. Field observations also took place at each ministry site. Key findings included importance of flexibility in ministry environments, shared spiritual responsibility of caregivers and ministry leaders, necessity of repetition and concrete examples in gospel presentation, emphasis on …

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 …

Bridging The Gap: Educating Students On The Neurodiverse Experience, Riley Axtell

Human Development and Family Sciences Undergraduate Honors Theses

Neurodivergent students face misunderstanding, stigma, and systemic barriers that impact academic and emotional well-being. The purpose of this study was to develop and implement a curriculum-based project designed to educate college students about neurodiverse experiences and improve knowledge, empathy, and understanding. The curriculum was administered in two formats: an in-person format with pre- and post-survey measurements and an online “choose your own adventure” implementation utilizing post-survey measurements. Participants engaged in simulated cognitive and sensory activities that represented experiences associated with dyslexia, ADHD, dysgraphia, and dyscalculia. Although limited by a small sample size, reliance on self-report measures, lack of a pre-survey …

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, …

On Speaking Up: Fluency Isn’T Intelligence — Living With A Stutter In A World That Expects Perfection, Dalton D. Conden

The Penguin Review

I-I-I-I’ve lived most of my life in the space between words—the pause, the breath, the moment of uncertainty where my voice decides whether it wants to cooperate. People often assume stuttering is a tiny inconvenience, like forgetting your keys or having bad Wifi. A stutter doesn’t fade just because you enter adulthood, college, or leadership roles. It grows with you. It travels into classrooms, meetings, speeches, and any moment where your voice becomes your first introduction to the world.

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 …

Exploring Autistic Children’S Play Cycles Using The Play Cycle Observation Method (Pcom), Eleanor C. Mugford, Pete King

International Journal of Playwork Practice

The Play Cycle Observation Method (PCOM) enables researchers to observe and record the process of play based on the theory of the Play Cycle. While the PCOM has been used with both video footage and in real-time observation of neurotypical children, it has not previously been applied with neurodivergent children. This study involved ten one-hour naturalistic PCOM observations with nine autistic children during play sessions. The results demonstrated variability in play processes, with several styles of play behaviour observed, including differences in how play was initiated, sustained, and terminated. The findings both corroborate and challenge strands of the existing literature …

Evaluating The Impact Of A Lend-Based Family Mentorship Program For Pre-Service Professionals, Matthew Bogenschutz, Sarah Lineberry, Jackie Robinson Brock, Flip Grey, Kathryn Flinn

Developmental Disabilities Network Journal

Family-led pre-professional mentoring programs have been shown in past literature to have multiple positive outcomes, including better provider communication, increased sensitivity to the needs and contributions of family members in clinical settings, and better understanding of disability policy contexts among professionals. Yet there have been relatively few examples of exemplary programs that have developed successful models for family mentoring of pre-service professionals. Using qualitative evaluative data from one such program, a component of a Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program, this study shares the experiences of both families and trainees. Common themes shared between these two groups …

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 …

Parents’ Lived Experiences With Competitive Integrated Employment For Children With Intellectual And Developmental Disability, Dr. Aisha J. Omar

Developmental Disabilities Network Journal

This phenomenological qualitative study explores the lived experiences of Kentucky parents seeking Competitive Integrated Employment (CIE) for their children with intellectual and developmental disabilities (I/DD). Guided by the research questions—How do parents experience this process, and what barriers or supports do they encounter?—the study highlights systemic challenges despite legislative efforts such as the Americans with Disabilities Act and the Workforce Innovation and Opportunity Act. In-depth interviews with five parents revealed three themes: (a) parental transformation and the pursuit of meaningful work, (b) systemic challenges in accessing CIE, and (c) overcoming protective instincts: navigating fear, independence, and self-advocacy. Findings suggest a …

Inaccessibility Harms: Exploring The Impact Of Inaccessible Campus Organizations On Disabled Students, Francis W. Q. Corvin, Natalie G. Horgan

Purdue Journal of Service-Learning and International Engagement

There are 3.5 million Disabled college students in the United States, with 4,671 utilizing disability services at Purdue University. Nationwide, 8–14% of students in higher education are Disabled, indicating a substantial number of students whose needs should be prioritized and supported. Inaccessibility impacts the way Disabled college students are able to engage with the college experience. Inaccessible classes, restrooms, clubs, job fairs, and campuses create significant barriers thatthat extend far beyond the classroom. Disabled students face challenges in securing scholarships, finding employment, graduating on time, and achieving long-term socioeconomic stability. Recognizing these barriers, HonorServes, a community service student committee at …

The Indispensable Role Of The Sister Disability Agencies: Safeguarding Progress And Enhancing Outcomes Through Collaboration, Lesley Cottrell, Susan Given, Christina E. Wiseman

Developmental Disabilities Network Journal

This manuscript emphasizes the critical importance of having a Disability Network of services—including University Centers for Excellence in Developmental Disabilities (UCEDDs), State Councils on Developmental Disabilities, and Protection & Advocacy organizations - in promoting systemic innovation and improved outcomes for individuals with developmental disabilities. Highlighting a case study from West Virginia, where collaboration between West Virginia University’s Center for Excellence in Disabilities, Disability Rights of West Virginia, and the West Virginia Developmental Disabilities Council has resulted in cost-effective, sustainable improvements, this paper underscores the urgent need to protect and expand these programs amidst current policy threats. The evidence underscores that …

Increasing Participation Through Online Focus Groups With Adults With Intellectual Disabilities, Emily L. Cary, Chris A. Taylor, Susan Havercamp, Andrea Witwer

Developmental Disabilities Network Journal

The aim of this study was to develop and describe methods on how to conduct virtual focus groups with adults with intellectual disability. Using a community-engaged research approach, adults with intellectual and developmental disabilities helped develop virtual focus group methods. We report on the implementation of these methods through an illustrative application of applying these adaptations to virtual focus groups with 13 adults with intellectual disability in a study assessing their perspectives on mental health therapy.

This work resulted in several adaptations that can enhance inclusivity of focus group research to individuals with intellectual disability. Adaptions broadly included: involving guardians …