Other Social and Behavioral Sciences Commons^™

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 …

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 …

Ucedd Innovations Lead To Idd Networks’ Driving Change: Envision, Empower, Employ, Suzzanne Freeze, Jean Winsor, Brittany M. Powers, Amy Huppi

Developmental Disabilities Network Journal

State systems responsible for administering employment services and supports to people with intellectual and developmental disabilities (IDD) must acclimate to changing demands, address new regulations, and continue to meet needs in an era of high workforce turnover and uncertain funding. While improvements have been made across the U.S., there are still far too many individuals seeking meaningful employment and contributory roles in the community who are not supported to achieve those goals. A key success factor is providing publicly funded state systems with the information needed to strategically pivot toward priorities and ensure smooth transitions of organizational change. Our country’s …

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 …

Preparing A Qualified Workforce To Support The Disability Community Through The Lend Interprofessional Learning Experience, Megan K. Roberts, Beth W. Degrace, Mark J. Fisher, Sandra H. Arnold

Developmental Disabilities Network Journal

Leadership and workforce preparation are vital roles of the nation’s academic institutions to advance health care services for the members of our communities. Leadership Education in Neurodevelopmental and other Related Disabilities (LEND) programs aim to prepare leaders in health care services and advocacy to improve systems and the quality of care and supports for the disability community, specifically children with developmental disabilities. LEND programs enhance standard health care pre-service training by providing interdisciplinary learning experiences for student trainees from a minimum of ten disciplines in 300 hours of learning activities over one academic year. An innovative feature of LEND programs …

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 …

From Strain To Strength: A Narrative Review Of Wellness Dimensions In Caregiving, Valerie Perkoski

Developmental Disabilities Network Journal

This narrative review investigates the positive aspects of being a family caregiver for individuals with developmental disabilities (DDs) using the National Wellness Institute’s Six Dimensions of Wellness (Emotional, Physical, Intellectual, Occupational, Spiritual, and Social). While much research has traditionally focused on “caregiver burden,” this review highlights the often-overlooked beneficial outcomes of caregiving. Emotional wellness is enhanced through gratitude and resilience. Physical wellness is discussed through interventions like physical activity, which can reduce caregiver distress. Intellectual wellness emphasizes personal growth and self-actualization, helping caregivers find fulfillment in their roles. Occupational wellness shows that employment and community engagement can reduce anxiety among …

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 …

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.

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.