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Developmental Disabilities Network Journal

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Articles 1 - 17 of 17

Full-Text Articles in Family and Consumer Sciences

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 Jul 2026

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 Jul 2026

“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 Jun 2026

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 …


Engaging Immigrant Families Of Children With Disabilities: Recommendations For Practitioners, Robai N. Werunga, John William Mckenna, Rocio Rosales Jun 2026

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.


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 Mar 2026

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 Feb 2026

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 Feb 2026

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 Jan 2026

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 …


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 Jan 2026

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 Jan 2026

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 Jan 2026

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

Developmental Disabilities Network Journal

No abstract provided.


Editorial: Digital Accessibility Practices Guided By Past Models And Modern Research, Cynthia Curry, Jared Smith May 2025

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 May 2025

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

Developmental Disabilities Network Journal

No abstract provided.


Acknowledgments, Matthew T. Wappett Ph.D. Sep 2024

Acknowledgments, Matthew T. Wappett Ph.D.

Developmental Disabilities Network Journal

No abstract provided.


Acknowledgments, Matt Wappett Jan 2024

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 Jan 2024

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

Developmental Disabilities Network Journal

No abstract provided.


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 Feb 2023

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 …