Disability and Equity in Education Commons^™

Ucedds Fill Gaps In Disability Services: A Storyteller’S Perspective, Jolynne J. Lyon

Developmental Disabilities Network Journal

A UCEDD writer's reflections on years of interviewing people with disabilities, service providers and researchers. The stories are profound, often because the service gaps bridged by the UCEDD are so great.

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 …

“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 …

Building Capacity And Inspiring Change: The Impact Of Louisiana’S Ucedd Across The Lifespan, Alicia Kowitz, Constance Alphonse, Phil Wilson, Maria Blanco

Developmental Disabilities Network Journal

The Louisiana State University Health Sciences Center Human Development Center (HDC), as the state’s University Center for Excellence in Developmental Disabilities (UCEDD), serves as a catalyst for inclusive systems change through interdisciplinary training, community engagement, and evidence-based service delivery. This manuscript highlights the breadth and impact of HDC’s initiatives across early childhood, education, transition, and community inclusion. Through programs such as Inclusive Practices in Early Childhood, PAYCheck, and LEND, HDC builds capacity among professionals, empowers individuals with disabilities and their families, and strengthens systems to be more responsive and equitable. The stories and outcomes shared illustrate how intentional, collaborative efforts …

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 …

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 …

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 …

Preparando Para Su Edad Y Su Futuro: Latina Mothers’ Perspectives Of Navigating Postsecondary Transition For Autistic Youth, Kristina Rios Dr., Katherine R. Brendli Brown, Genna Kieper, Cynthia Velasquez, Amber Brown Ruiz

Developmental Disabilities Network Journal

Families play a critical role in the education and service provision of Autistic students. However, much of the existing research on family involvement and expectations has centered on families of younger Autistic children and has disproportionately reflected the experiences of White families, even though Latinx families may include individuals of any racial background. Furthermore, while there is growing transition literature focused on families of color, Latinx families—particularly those with Spanish-speaking caregivers—remain underrepresented in studies examining the postsecondary transition. There is a critical need for research that captures Latinx caregivers’ perspectives on navigating the transition process and identifies how educators can …

The Effect Of A Preclinical Disability Elective On Medical Student Awareness, Attitudes, And Clinical Competency, Emily Hillmer, Willi Horner-Johnson, Rhonda Eppelsheimer

Developmental Disabilities Network Journal

Opportunities for education on disability are sparse in many medical school curricula, leaving students ill-prepared to address the needs of patients with disabilities in their future careers. The purpose of our study was to design and implement a novel elective course on disability for medical students and evaluate the effect of the course on student awareness, attitudes, and clinical skills. Medical students were surveyed to assess interest in a new disability elective and to understand in what areas they felt their knowledge and skills were most lacking. With support from our University Center for Excellence in Developmental Disability, we utilized …

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 …

Training On "Learn The Signs. Act Early." In Head Start And Early Head Start Shows Ineffective Without Supporting Implementation Policy, Kayla Livingston, Mary O'Donnell, Kate G. Barlow

Developmental Disabilities Network Journal

Early identification and intervention for children with developmental delays improves child outcomes, yet many children are not monitored, screened, or identified early despite its effectiveness. The relationship between the use of the Centers for Disease Control and Prevention’s “Learn the Signs. Act Early.” developmental monitoring program and referrals to intervention services is not well understood. This study investigated how “Learn the Signs. Act Early.” implementation practices within Massachusetts’ Head Start and Early Head Start agencies correlated with the rate of referrals to intervention services. Researchers utilized a non-experimental quantitative design. Secondary data on referral rates from Head Start and Early …

Educating Medical Trainees On Mental Healthcare And Intellectual And Developmental Disabilities, Andrea Palmieri, Joan B. Beasley, Micah Peace Urquilla, Jennifer Mclaren

Developmental Disabilities Network Journal

Many children and adults with intellectual and developmental disabilities (IDD) experience mental health conditions and commonly receive treatment with psychotropic medications. Prescribers often overuse these medications in children with IDD, who are frequently treated with polypharmacy and antipsychotics, a trend that continues into adulthood. Medical trainees receive little training regarding the IDD patient population. This paper describes the development and evaluation of an evidence-informed, easy-to-use training curriculum. The 6-hour training establishes a foundation for medical trainees regarding the treatment of mental health conditions in people with intellectual and developmental disabilities (IDD-MH) as part of an integrated health, interdisciplinary treatment approach. …

Preserving Progress: Why The Dd Network Matters Now More Than Ever, Matt Wappett

Developmental Disabilities Network Journal

No abstract provided.

Enhancing Digital Accessibility For Deaf Or Hard Of Hearing Learners- Innovative Strategies For Inclusive Education, Felicia Rutledge Ph.D.

Developmental Disabilities Network Journal

This research-to-practice brief explores innovative strategies to enhance digital accessibility for Deaf or Hard of Hearing (D/HH) learners, focusing on practical applications for inclusive K-12 education. Despite advances in digital learning, D/HH learners face unique barriers due to auditory-centered designs. Accessibility legislation such as the ADA, Section 504, and IDEA mandate educational inclusion for these learners. Key strategies include the integration of assistive technologies (e.g., captioning, ASL video interpretation), the application of the Universal Design for Learning (UDL) 3.0 guidelines, and adherence to WCAG 2.1 principles for accessible content design. The research-to-practice brief provides actionable insights for educators, administrators, and …

Shifting To A Culture Of Inclusion By Design: Applying A Mixed-Methods Approach To Advance Accessibility Of Public Health Emergency Information & Communication Technology, Jessica L. Franks, Erin Vinoski Thomas

Developmental Disabilities Network Journal

Adults with intellectual and developmental disabilities (IDD) experience inequities in access to timely, accurate, and understandable information and communication technology (ICT), which increases risk for public health emergency (PHE)-related health disparities and impedes opportunities to achieve optimal health. This study assessed federal COVID-19 webpage accessibility levels and explored existing knowledge of and experience with filing accessibility complaints for federal ICT among adults with IDD. Through a mixed-methods approach, we evaluated compliance with accessibility standards for 18 federal agencies’ COVID-19 webpages (study 1) and interviewed 16 adults with IDD about experiences accessing federal webpages and filing accessibility complaints (study 2). We …

Enhancing Online And Blended Course Design Through Conversations And Observations: The Role Of Stakeholders, Chris Smith, Darlene Schaefer, Geetanjali Soni, Thomas Cooper, Meghan Mcgrath

Developmental Disabilities Network Journal

Online course enrollment for K-12 students has increased dramatically since the early 2000s. This has resulted in promising opportunities for students with disabilities but also requires careful consideration of accessibility in course design and instructional delivery. This mixed-methods study investigated how stakeholder feedback influences the design of blended courses at North Carolina Virtual Public School (NCVPS), a graduation pathway for students with disabilities requiring significant support. Data was collected through surveys of NCVPS online teachers and co-teachers, analysis of course history documents, and the NCVPS student registration system. Findings revealed that educators often modify course templates to accommodate diverse learning …

Where Digital Accessibility Meets Universal Design: Transforming Classrooms For Multilingual Learners With Disabilities, Vitaliy Shyyan, Laurene Christensen, Swati V. Chauhan

Developmental Disabilities Network Journal

Multilingual learners with disabilities comprise an important population of diverse students that need to be empowered with accessible instructional and assessment materials on their pathways to college, career, and community readiness. These students require integrated supports for both language- and disability-related needs. Conventional approaches to accessibility often fall short in addressing the diverse linguistic, cognitive, and cultural needs of multilingual learners with disabilities. This article examines the intersection of digital accessibility and principles of universal design to create more inclusive and equitable educational environments for these students. Universal design provides a flexible framework that accommodates diverse learning needs by offering …

Optimizing Accessibility Training By Prioritizing Cognitive Needs Of Students With Disabilities, Lio Jones, Kari Goin, Megan Mcfarland

Developmental Disabilities Network Journal

Despite the significant enrollment of students with disabilities in higher education, research and practice rarely center the voices and leadership of these students, particularly in accessibility training efforts. This paper addresses this gap by presenting an autoethnographic study of a digital accessibility training initiative co-led by a student with multiple disabilities. Using a process that combines participatory research and first-person narrative, this study outlines the development and implementation of faculty training on accessibility that centers the experiences of a student with cognitive disabilities. We propose a new framework for understanding "dynamic disability," a concept that recognizes the complex and evolving …

Access To Idea Data By People With Disabilities, For People With Disabilities, Johan Rempel, Fred Edora

Developmental Disabilities Network Journal

The Rhonda Weiss Center for Accessible IDEA Data’s (Weiss Center) mission is to improve state capacity to collect, report, analyze, and use IDEA data in accessible formats for individuals with disabilities. IDEA stands for Individuals with Disabilities Education Act. One of the ways we at the Weiss Center aim to achieve this is through the development and adoption of our Accessible Data Analysis and Publishing Tool (ADAPT). States are responsible for numerous federal reporting requirements on performance indicators related to infants, toddlers, and children with disabilities. States often have limited capacity and resources to ensure this data is fully accessible. …

Editorial: Digital Accessibility Practices Guided By Past Models And Modern Research, Cynthia Curry, Jared Smith

Developmental Disabilities Network Journal

No abstract provided.

Digital Accessibility: A Critical Imperative For Inclusive Information Access, Matt Wappett

Developmental Disabilities Network Journal

No abstract provided.

Impact Of County-Level Urbanicity On Quality Of Life For People With Intellectual And Developmental Disabilities In A Rural State., Alyssa M. Smith, Allison Caudill

Developmental Disabilities Network Journal

People with intellectual and developmental disabilities (IDD) face challenges, such as decreased access to physical, environmental, and social health-related services that can negatively impact their overall quality of life (QoL). Additionally, people living in rural communities may experience geographic distancing and other factors, like decreased transportation and available housing, that contribute to increased isolation and decreased health outcomes, overall. It is important to consider the QoL of people with IDD living in these communities given the additional intersectional constraints of rurality and having an intellectual disability or other co-occurring conditions. A secondary data analysis reviewed closed and open-ended survey data …

Disability Education In Medical Schools: A Paradigm Shift For Inclusive Care, Hannah Ship Md, Mph, Sahana Shankar M.D., Rochelle Baer Lcsw, Jeffrey Brosco M.D., Ph.D., Jairo Arana, Damian Gregory, Robert Irwin M.D., Gauri Agarwal M.D., Sabrina Taldone Md, Mba, Sheryl Eisenberg Michalowski Ma, Daniel Quintero M.D., Anna Shah M.D., Frank Woo M.D., Michelle Schladant Ph.D., Ashley Falcon Phd, Mph

Developmental Disabilities Network Journal

Disability education for medical students is often insufficient and can contribute to health disparities for people with disabilities. Our interdisciplinary curriculum development team created a longitudinal 4-year disability education model aimed at improving patient care for people with disabilities. Central to our curriculum are progressive sessions aligned with students' medical journey, including three required sessions covering interdisciplinary healthcare teams, implicit bias, health disparities, disability culture, shared decision-making, communication, and self-determination. Through the inclusion of people with disabilities, an interdisciplinary curriculum development team, and trainee-driven advocacy, our longitudinal multi-phasic disability education curriculum seeks to mitigate health disparities. Our innovative approach addresses …

Technology Skill Building For Adults With Intellectual And/Or Developmental Disabilities, Heather J. Williamson, Hailee E. Riddle, Cynthia Sloan, Cameron Dogan, Byran Dai, Jon Meyers

Developmental Disabilities Network Journal

Compared to their peers without disabilities, adults with intellectual and/or developmental disabilities are less likely to be employed. Adults with intellectual and/or developmental disabilities also face a digital divide, with less access to and use of technology in their daily lives. This lack of technology use also limits the types of employment available to adults with intellectual and/or developmental disabilities. The purpose of this paper is to describe the implementation of an individualized technology skill-building program for adults with intellectual and/or developmental disabilities in Arizona. The community-engaged project was overseen by a Community Advisory Board who provided insights on program …