Social Policy 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.

Women Refugees & Immigrants: What Utahns Need To Know, Susan R. Madsen, Deborah Lin

Marketing and Strategy Faculty Publications

Refugee and immigrant women are an integral part of Utah’s communities, contributing as neighbors, workers, entrepreneurs, caregivers, and advocates. They enrich our state through their diverse perspectives, experiences, and talents. Utah has a long tradition of welcoming newcomers, and our communities are stronger when everyone has the opportunity to belong and contribute. At the same time, research shows that many of the challenges facing Utah women and girls disproportionately affect refugee and immigrant women. Understanding the experiences, needs, and contributions of these women is essential to fostering welcoming, supportive communities so that all Utah women and girls can thrive.

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 …

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 …

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 …

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 …

Conducting A Pilot Evaluation Of A Civic-Engagement Program For Youth With Disabilities, Megan Best, Amanda Johnston, Sarah Demissie, Julianna Kim, Ruchi Mendiratta Khanna, Kelly Fulton, Abby Hardy, Catherine Cheung, Timothy Kunzier, Oscar Hughes, Meghan M. Burke, Zachary Rossetti

Developmental Disabilities Network Journal

The Individuals with Disabilities Education Act (IDEA) is the federal law that ensures all students with disabilities have access to a free and appropriate public education. In the last IDEA reauthorization in 2004, only 1% of public comments were from individuals with disabilities—the population that IDEA serves. To ensure that the feedback of individuals with disabilities is reflected in the next IDEA reauthorization, it is important to support them to learn about IDEA and advocate. To this end, for this pilot study, 16 transition-aged youth with disabilities participated in a 6-hour civic-engagement program across four states to learn about IDEA …

Acknowledgments, Matthew T. Wappett Ph.D.

Developmental Disabilities Network Journal

No abstract provided.

Professional Development Strategies For Treating People With Idd And Mental Health Needs, Jennifer L. Mclaren, Elizabeth Grosso, Karen L. Weigle

Developmental Disabilities Network Journal

People with intellectual and developmental disabilities (IDD) experience significant health and mental health inequities and difficulties accessing care. There are few initiatives that train mental health professionals to care and advocate for the health and mental health care needs of people with intellectual and developmental disabilities.

We developed a Mental Health and Intellectual and Developmental Disabilities Professional Learning Community (PLC) with Clinical Education Teams (CET) training components through The National Center for START (Systemic-Therapeutic-Assessment-Resources-Treatment) Services^® to further educate providers in the United States. The National Center for START Services^® utilizes multiple training and collaboration forums to build the …

Peer-Mediated Family Support Project: Evaluation Of Changes In Family Quality Of Life, Preethy S. Samuel, Elizabeth Janks, Nia S. Anderson, Michael Bray, Christina Topolewski, Sharon Milberger

Developmental Disabilities Network Journal

The Family Quality of Life (FQOL) approach represents a paradigm shift from fixing to supporting people with intellectual/developmental disabilities (I/DD) by changing the focus from the individual to the family and highlighting strengths rather than deficiencies. Aging family caregivers of individuals with I/DD often encounter obstacles, including accessibility, acceptability, and affordability of services. Little is known about best practices to support aging families of adults with I/DD. Understanding how a state-wide peer-mediated family support project implemented in this study helped improve the FQOL of aging caregivers is important in broadening participation of other caregivers in these types of programs. To …

Interdisciplinary Treatment Approach To Youth With Intellectual Or Developmental Disabilities And Co-Occurring Mental Health Conditions, Ashley Greenwald, Erika Ryst, Diane D. Thorkildson, Lauren Brown

Developmental Disabilities Network Journal

Many individuals with Intellectual and/or Developmental Disabilities (IDD) have co-occurring mental health needs, yet service delivery options often do not allow for the integrated delivery of mental health treatment and social behavioral support services. Siloed treatment approaches often result in lack of collaboration between providers, increasing the difficulty in accessing comprehensive and coordinated treatments and reducing treatment potential and effective outcomes. Additionally, many service providers in behavioral support services are not trained to address significant mental health needs; similarly, providers of mental health services lack experience in modifying practices for differing cognitive needs. The lack of cross-training and cross-collaboration makes …

The Link Center: A Federally Funded Technical Assistance And Resource Center Aimed At Improving Mental Health Treatment And Access For People With I/Dd, Brain Injury, And Other Cognitive And Communication Differences., Stacy L. Nonnemacher, Jeanne Farr, Wendy Morris

Developmental Disabilities Network Journal

Although we do not have robust prevalence studies in the U.S., a recent meta-analysis estimated that 33.6% of individuals with intellectual and developmental disabilities (I/DD) have a mental health (MH) condition. We know that this prevalence may be an underrepresentation because of factors like diagnostic overshadowing. We also know that people with I/DD experience inequitable access to quality MH and preventive care. This highlights the chronic lack of and access to holistic, integrated care for individuals with I/DD, especially those who also have MH conditions. Consequently, an increasing number of individuals with I/DD experience MH crises and suffer adverse consequences. …

Building Neuro-Inclusive Community, Strengthening Mental Health: The Autism After 21 Utah Project, Sumiko T. Martinez, Anna Smyth, Ann C. Carrick

Developmental Disabilities Network Journal

Over two decades of research shows strong positive relationships are a consistently powerful indicator of wellbeing and resilience. However, the U.S. Surgeon General notes that loneliness and isolation is an epidemic in the U.S., and that it is exacerbated for individuals with physical and mental disabilities as well as those with isolating economic or environmental situations. A recent review shows that many autistic adults in particular face challenges in finding the connections they want and need. They also often have compounding mental health conditions, such as depression and mental illness, lower incomes, isolating home environments due to a lack of …

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.

A Scoping Review Of Health Research With Racially/Ethnically Minoritized Adults With Intellectual And Developmental Disabilities, Heather J. Williamson, Tara Chico-Jarillo, Samantha Sasse, Leticia Rennie, Jennifer R. Etcitty, Carol L. Howe, Michele Sky Lee, Julie S. Armin

Developmental Disabilities Network Journal

Living with intersectional identities, having a disability, and being a member of a racial or ethnic minoritized group in the U.S., contributes to marginalization that may result in health disparities and health inequities. The purpose of this scoping review is to describe health research regarding adult racial/ethnic minoritized individuals in the U.S with intellectual and developmental disabilities (I/DD). Eight electronic databases were searched to identify literature on the topic published since 2000. Of the 5,229 records, 35 articles were included in the review. Eligible studies included research conducted in the U.S., published in English, and research focused on adults with …