Social Justice Commons^™

“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 …

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 …

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.

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 …

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 …

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 …

Children And Youth With Special Health Care Needs (Cyshcn) Regional Support Centers (Rsc): A Framework For Effectively Engaging Stakeholders, Jenna Lequia, Susan Burlazzi, Abby Beer, Miriam Franco, Kathleen Mcgrath, Angel Morales, Joanne Siegel, Susan Hetherington, Tricia Patrick

Developmental Disabilities Network Journal

The three University Centers for Excellence in Developmental Disabilities (UCEDDs) in New York served as Children and Youth with Special Health Care Needs (CYSHCN) Regional Support Centers (RSC). The RSCs aimed to increase the capacity of local CYSHCN programs to connect with and support CYSHCN and their families in their community. RSCs conducted activities in the areas of family engagement, training and educational materials development, and technical assistance. RSCs engaged in ongoing dialogue with CYSHCN and their families to learn about experiences to inform systemic improvements through focus groups, interviews, and surveys. This article describes a statewide framework to serve …

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 …

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 …

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.

Applying A Framework Of Epistemic Injustice To Understand The Impact Of Covid-19 On People With Intellectual And Developmental Disabilities, Sarah Lineberry, Matthew Bogenschutz

Developmental Disabilities Network Journal

Epistemic injustice, the theory of unfairness related to knowledge, is a useful framework for understanding the ways in which historic and ongoing marginalization and stereotypes have shaped the ways that people with intellectual and developmental disabilities (IDD) have been impacted by the COVID-19 pandemic. We conducted a scoping review of the literature and divided findings into physical health (cases, hospitalization, and death) and psychosocial outcomes (access to services, mental health symptoms, community participation, etc.). Impacts were then analyzed using the key principles of epistemic injustice. Findings suggest that people with intellectual and developmental disabilities (IDD) experienced high rates of negative …

Acknowledgments, Matthew T. Wappett Ph.D.

Developmental Disabilities Network Journal

No abstract provided.

Acknowledgments, Matt Wappett

Developmental Disabilities Network Journal

No abstract provided.

Advancing Strength-Based Inclusive Mental Health Research In Intellectual And Developmental Disabilities, Luther Kalb, Joan B. Beasley

Developmental Disabilities Network Journal

No abstract provided.

Health And Quality Of Life Among People With Intellectual And Developmental Disabilities And Direct Support Professionals During The Early United States Covid-19 Pandemic, Erin Vinoski Thomas, Bridgette M. Schram, Sombal Bari, Rachel Odunlami, Kristina M. Ormond, Sydnie E. Smith

Developmental Disabilities Network Journal

People with intellectual and developmental disabilities (IDD) and the direct support professionals (DSPs) who support them have faced unique risks to their health and quality of life (QoL) throughout the COVID-19 pandemic. We sought to understand how COVID-19 has influenced QoL and overall well-being among these populations. We conducted a Rapid Qualitative Inquiry study with a sample of people with IDD and DSPs (n = 18) to gain deeper perspectives about QoL and well-being during the pandemic. Participants described that changes in QoL were typically negative and influenced primarily by reduced socialization and impacts on health and independence; however, …

Beyond Representation: Partnerships, Intersectionality, And The Centering Of The Disability, Family, And Community Lived Experience, Lydia Ocasio-Stoutenburg, Julieta Hernandez, Douglene Jackson

Developmental Disabilities Network Journal

The COVID-19 pandemic introduced a public health crisis, overlaying the disparities in healthcare access, treatment, and outcomes that were already prevalent in Black and Latino communities across the U.S., particularly persons with disabilities (PWD) at the intersection of racial and ethnic identities. In addition, the concurrent social and political climate mirrored the pandemic in its action of magnifying existing systemic inequities for historically marginalized populations, calling for institutions to galvanize efforts toward diversity, equity, and inclusion (EDI). Our University Center on Excellence in Disabilities (UCEDD) serves a range of families whose children have disabilities or complex health care needs and …

Paths To Equity: Parents In Partnership With Ucedds Fostering Black Family Advocacy For Children On The Autism Spectrum, Elizabeth H. Morgan, Benita D. Shaw, Ida Winters, Chiffon King, Jazmin Burns, Aubyn Stahmer, Gail Chodron

Developmental Disabilities Network Journal

Racism and ableism have doubly affected Black families of children with developmental disabilities in their interactions with disability systems of supports and services (e.g., early intervention, mental health, education, medical systems). On average, Black autistic children are diagnosed three years later and are up to three times more likely to be misdiagnosed than their non-Hispanic White peers. Qualitative research provides evidence that systemic oppression, often attributed to intersectionality, can cause circumstances where Black disabled youth are doubly marginalized by policy and practice that perpetuates inequality. School discipline policies that criminalize Black students and inadequate medical assessments that improperly support Black …

Loving My Skin: A Self-Advocate’S Perspective From Dayton, Ohio, Shari Cooper

Developmental Disabilities Network Journal

No abstract provided.

Advance Care Planning Within Individualized Care Plans: A Component Of Emergency Preparedness, Heather L. Church, Christina Marsack-Topolewski, Jacqueline M. Mcginley, Victoria Knoke

Developmental Disabilities Network Journal

Federally-legislated Medicaid requirements for recipients with intellectual and/or developmental disabilities (IDD) to have a person-centered plan (PCP) do not specifically require that advanced care plans (ACP) be a component of the plan. However, coronavirus disease 2019 (COVID-19) has provided a salient reminder of the importance of incorporating ACP within the PCP for people who have IDD. As demonstrated by situations arising from COVID-19, emergencies and crises can dramatically alter access to care for people with IDD. This paper synthesizes results from an environmental scan related to ACP for adults with IDD. Findings suggest that the use of ACP, particularly when …

Person-Centered Practice As Anchor And Beacon: Pandemic Wisdom From The Ncapps Community, Connor Bailey, Martha Barbone, Lydia X.Z. Brown, Alixe Bonardi, Bevin Croft, Marian Frattarola-Saulino, Karyn Harvey, Miso Kwak, Kelly Lang, Nicole Leblanc, Michelle C. Reynolds, Carole Starr

Developmental Disabilities Network Journal

Objective: This article summarizes the individual, systemic, and collective challenges and opportunities presented by the COVID-19 pandemic, based on 16 videos solicited by the National Center on Advancing Person-Centered Practices and Systems (NCAPPS) and submitted by NCAPPS collaborators during the first six months of the pandemic.

Method: Informed by participatory action approaches and content analysis, we describe common themes in a series of 16 videos solicited by NCAPPS from subject matter experts with professional and lived experience of disability and human services systems.

Results: The team organized the findings to identify both specific factors within each of the levels and …

Virtual Advocacy: Lived Experience Takes Center Stage During And After Pandemic, Gyasi Burks-Abbott, Amanda V. Gannaway, Amy Szarkowski, Jason M. Fogler, David T. Helm

Developmental Disabilities Network Journal

COVID-19 forced a significant change for participants of the Disability Policy Seminar (DPS) typically held annually in Washington, D.C. The DPS is a policy event that both informs its participants about current policy and supports attendees visiting Capitol Hill to meet with legislators. In 2020, the DPS event, which took place during the early phase of the pandemic, was shifted from “on the Hill” to “across the screen”. Through the various lenses of an autistic self-advocate, a mother of a child with a developmental disability, and faculty of a LEND (Leadership Education in Neurodevelopmental and related Disabilities) program, this paper …