Digital Commons Network^™

The Promising Practice Of Cultural Brokering Support With Culturally Diverse Families Of Children With Developmental Disabilities: Perspectives From Families, Yali Pang, Dana V. Yarbrough

Developmental Disabilities Network Journal

Background and Purpose: The Parent to Parent model of support has been found to be effective with supporting families of children with DD in navigating complex systems, gaining emotional support, building positive resilience, sharing ideas and learning problem solving skills. Parent to Parent ties can be particularly strong when cultural capital is involved. This study presents a cultural brokering initiative embedded in the evidence-informed Parent to Parent support model that could be a promising practice to support culturally diverse families of children with DD.

Methods: This study used a mixed methods approach to examine the practice and outcomes of a …

Differential Access Of Young Children Of Immigrants To Special Education In Massachusetts, Cady Landa

Developmental Disabilities Network Journal

Accessing services for children with special needs is complex and challenging for even U.S.-born parents. Is it even more difficult for immigrant parents, and what are the consequences for their children? This article reports on a mixed methods approach to examining the access of immigrants’ children to special education and inclusive placement. A multivariate analysis of Massachusetts education data finds that children of immigrants are significantly less likely than children of U.S.-born parents to participate in special education. It also finds that among children who do participate in special education, children of immigrants are more likely to be in substantially …

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 …

Acknowledgments And A Note From The Editor, Matt Wappett

Developmental Disabilities Network Journal

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

Developmental Disabilities Network Journal

No abstract provided.

Flipping The Script As A Black Mother Living In My Community: A Self-Advocate's Perspective From Baltimore, Jessica Salmond

Developmental Disabilities Network Journal

No abstract provided.

Opportunities For Transformation: Equity, Diversity, And Inclusion Across The Developmental Disabilities Network, Lydia Ocasio-Stoutenburg, Jacy Farkas

Developmental Disabilities Network Journal

No abstract provided.

Family Perspectives On Developmental Monitoring: A Qualitative Study, Sarah Behrens, Evan Dean, Marisol Torres

Developmental Disabilities Network Journal

Developmental monitoring, an ongoing process to identify children at risk for developmental delays, is an essential component to the identification of a developmental disability in young children. In collaboration with families, medical professionals are expected to monitor the development of a child; however, current research focuses on screening with less attention on developmental monitoring and the role of the family. Here, we show the experiences of families with medical professionals specific to developmental monitoring and how families obtain and develop knowledge on child development. We analyze qualitative data from a sample of family caregivers using semi-structured interviews. With a thematic …

Collaboration Between Secondary Special Education Teachers And Community Rehabilitation Service Providers: A Focus Group Analysis, Tabitha L. Pacheco, Robert L. Morgan, Michelle C. Mcknight-Lizotte

Developmental Disabilities Network Journal

Collaboration by professionals across agencies has been identified as a research-based practice associated with successful post-school outcomes for students with disabilities. Succesful post-school outcomes include community employment, postsecondary education (such as involvement in two- or four-year college programs), and independent living for young adults with disabilities. Vocational rehabilitation counselors, special educators, and community rehabilitation providers (CRPs) must collaborate to increase the probability of successful outcomes, particularly given the advent of Pre-Employment Transition Services (Pre-ETS). Five core areas of Pre-ETS include: (a) job exploration counseling, (b) work-based learning experiences, (c) counseling, (d) workplace readiness training to develop social skills and independent …

Parents’ Perceptions Of The College Experiences Of Twice-Exceptional Students With Autism Spectrum Disorder, Joseph Madaus, Emily J. Tarconish, Shannon Langdon, Ashley Taconet, Nicholas W. Gelbar

Developmental Disabilities Network Journal

Students with Autism Spectrum Disorder are accessing college in increasing numbers, and within this group, there is a cohort of academically talented students who can be considered twice-exceptional, or 2e-ASD. While research about college students with ASD is increasing, there is a relative dearth of literature about 2e-ASD college students, and their secondary transition and college experiences. The current study presents the results of individual interviews that were conducted with 10 parents of 2e-ASD college students to explore their perceptions of their children’s experiences, including what things went well and what were problematic areas. Parents described clear and early expectations …

Perceptions Of College Students With Autism Spectrum Disorder On The Transition To Remote Learning During The Covid-19 Pandemic, Joseph Madaus, Alexandra Cascio, Nicholas W. Gelbar

Developmental Disabilities Network Journal

COVID-19 caused a major shift in how college students, including those with disabilities, received their education during the Spring 2020 semester. The rapid shift to remote learning resulted in new challenges, but also, some benefits for students. This study presents the results of open-ended responses of a cohort of 31 students with autism spectrum disorder (ASD) who were part of a larger study and enrolled in very- to highly competitive institutions (as rated by U.S. News and World Report) during the Spring 2020 semester regarding their experiences, both positive and negative, in shifting to remote learning. The students described …

Experiential Learning Through Participatory Action Research In An Interdisciplinary Leadership Training Program, Jessica L. Franks, Stephanie D. Baumann, Marvin So, Angela M. Miles, Jorge M. Verlenden, Teal Benevides, Mark Crenshaw, Stephen Truscott, Daniel Crimmins

Developmental Disabilities Network Journal

Background: Experience in multidisciplinary collaboration among healthcare providers, leaders in public health, and educators is essential to effectively address the diverse needs of children with intellectual and developmental disabilities (I/DD) and their families.

Purpose: We describe three participatory action research (PAR) projects from an interdisciplinary training program, which used experiential learning to enhance leadership competencies and promote inclusive services. Trainees report their leadership growth as providers and advocates for children with I/DD using experiential learning through PAR.

Approach: Trainees discuss their engagement with organizations serving children with I/DD and ways that experiential learning supported leadership skill development, …

Assessing Need And Acceptability Of A Youth Mentoring Intervention For Adolescents With Autism By Adults With Autism, Kai Y. Gunty, Lindsey Weiler, Angela Keyzers, Rebekah Hudock

Developmental Disabilities Network Journal

Background: Adult mentors can positively influence development, yet youth with autism spectrum disorders (ASD) have too little access to adult mentors who can provide role modeling, guidance, and support. Furthermore, neurotypical adult mentors (i.e., adult mentors without ASD) may not understand the day-to-day realities that youth with ASD face and the social world they navigate. Therefore, it is possible that adults with ASD may be particularly well-suited as mentors for youth with ASD.

Method: Six semi-structured focus groups of four to seven people each explored the need for a mentoring program to bridge the gap between the supports youth with …

Equitable Vaccine Access Within An Age-Based Framework, Alan B. Cobo-Lewis

Developmental Disabilities Network Journal

Objectives: When vaccine supply was limited, several states adopted age-based prioritization for Covid-19 vaccine eligibility because it is simple (especially when age is quantized by decade) and age is strongly associated with Covid-19 mortality. But this approach raises equity concerns based in law and ethics. I propose data-driven solutions for equitable policy within an age-based framework. Methods: Using CDC and Census Bureau data, I analyzed 538,627 U.S. Covid-19 deaths by age and race-ethnicity through February 2021 and compared the risk ratios to published data on risk ratios for other conditions. Results: Covid-19 mortality rose 2.56-fold per decade of life. Down …

Introduction And Acknowledgments, Matt Wappett

Developmental Disabilities Network Journal

No abstract provided.

Testing The Efficacy Of Leadership For Empowerment And Abuse Prevention (Leap), A Healthy Relationship Training Intervention For People With Intellectual Disability, Parthenia Dinora, Seb Prohn, Elizabeth P. Cramer, Molly Dellinger-Wray, Caitlin Mayton, Allison D'Aguiliar

Developmental Disabilities Network Journal

Leadership for Empowerment and Abuse Prevention (LEAP) is an abuse prevention intervention for people with intellectual disability. The purpose of this research was to evaluate the intervention’s efficacy. Findings indicated no significant differences in scenario identification questions depicting acceptable or concerning situations. However, statistically significant improvements were noted in participants’ depth of understanding, including their ability to correctly describe why a scenario was abusive or exploitative and what to do next when confronted with unhealthy situations. Limitations and implications for practice are discussed.

Testing A Wellness Indicators Measure For People With Intellectual And Developmental Disabilities, Matthew Bogenschutz, Michael Broda, Sarah Lineberry, Parthenia Dinora, Seb Prohn

Developmental Disabilities Network Journal

Background and Purpose: People with intellectual and developmental disabilities (IDD) often have health and wellness issues that are not as good as people without disabilities. States are required to monitor health and wellness for people with IDD who use many disability services. However, there are few ways to monitor wellness between states or at different points in time. In this study, we share a new model that states may use to monitor wellness of people with IDD.

Methods: We used data from a survey called the National Core Indicators (NCI) to develop this model. First, we developed the model using …

Promoting Inclusion Of Adults With Disabilities In Local Fitness Programs: A Needs Assessment, Samantha M. Ross, Bridgette Schram, Kathleen Mccarty, Nicole Fiscella, Willie Chun Wai Leung, Kayla Lindland

Developmental Disabilities Network Journal

Fit-Pals* is a university-based, service-learning program with a mission to prepare adults with disabilities to engage in lifelong physical activity. We conducted a Needs Assessment to evaluate recent programmatic partnerships with community-based fitness organizations. We aimed to (1) evaluate organizational perceptions of Fit-Pals’ partnership efforts, and (2) identify perceived organizational needs to improve inclusion practices. Representatives from each of our seven partner organizations participated in an online-survey, follow-up interviews, and a stakeholder meeting. A thematic analysis of survey and interview responses highlighted areas for programmatic growth related to training in disability awareness and fitness accommodations, and improved communication across all …

College Students’ Knowledge Of And Openness To Students With Autism Spectrum Disorder, Louis W. Turchetta, Valerie Ryan

Developmental Disabilities Network Journal

College students with autism spectrum disorder (ASD) face challenges due to limited understanding of this condition. This study investigates college students' awareness of and openness to peers with ASD using an educational intervention. Data were analyzed via a pre–post survey design with two groups.

Factorial analysis of variance showed no significant differences between groups. However, a Wilcoxon signed-rank test revealed significant differences in the treatment group’s ranks on the openness scale and knowledge scale between pre- and post-intervention surveys. Findings yielded small (openness) and large effect sizes (knowledge) as expected. Brief educational interventions in required courses can thus potentially enhance …

Community Conversations: Finding Solutions To Increase Employment For Individuals With Intellectual And Developmental Disabilities, James Sinclair, Kyle Reardon, Katherine W. Bromley, Christen Knowles, Dana Cohen Lissman, Megan Kunze

Developmental Disabilities Network Journal

This study describes the implementation and findings of a pilot community conversations event in the state of Oregon to identify innovative solutions to under- and unemployment experienced by individuals with intellectual and developmental disabilities (IDD). The event was facilitated in partnership with the University of Oregon UCEDD, local Arc chapter, and other relevant community stakeholders. A total of 36 diverse individuals (e.g., school personnel, business owners, individuals with IDD, and caregivers of individuals with IDD) participated in a two-hour community conversations event about how to improve employment opportunities for those experiencing IDD. Participants engaged in discussions about solutions to employment …

Parents’ Beliefs Regarding Shared Reading With Infants And Toddlers, Emma Brezel Mbe, Libby Hallas-Muchow Ms, Alefyah Shipchandler, Jennifer Hall-Lande Phd, Lp, Karen Bonuck Phd

Developmental Disabilities Network Journal

Parent beliefs about reading to young children- and factors related to such beliefs- affect a child’s reading skill. But, little is known about parent beliefs about reading to infants and toddlers. To fill this gap, three University Centers of Excellence in Developmental Disabilities (UCEDDs) studied 43 English and Spanish speaking parents of children aged 9-18 months. The three UCEDDs were working on a project to create a children’s book that had tips for parents about how their one year-old learns and grows. The UCEDD study survey asked about parent beliefs about reading to young children (4 questions) and factors related …

Daily Life Experiences Of Families Of People With Disabilities During Covid-19 Pandemic, Evan E. Dean, Karrie A. Shogren, Courtney Sanchez, Sean Swindler

Developmental Disabilities Network Journal

Background. For people with IDD and their families, COVID-19 has introduced additional challenges including significant disruptions to daily life and increased risk in accessing services and supports. Understanding how families are adapting and navigating through the crisis is critical both to inform ongoing supports as the pandemic continues and beyond as there will likely be ongoing changes in service and support delivery both directly and indirectly related to COVID-19. The purpose of this study was to survey families in one Midwest state in the U.S. to document experiences during COVID-19 with a focus on understanding how families are navigating current …

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 …

Editorial: Increasing Accessibility In Academic Publishing And Upcoming Initiatives, Matt Wappett

Developmental Disabilities Network Journal

This editorial provides an overview of the current issue, and then several initiatives that DDNJ is working on to increase the accessibility of academic publishing. This editorial introduces our new podcast and our upcoming presentation at the Fall 2021 AUCD Conference.

The Origins Of University Centers On Developmental Disabilities: Second Generation Expectations And Growth, Bryce Fifield, Marvin G. Fifield

Developmental Disabilities Network Journal

Part two of a two part publications tracing the evolution of University Centers on Disabilities. Originally University Affiliated Facilities evolved into University Affiliated Programs on disabilities. Early expectations outlined by President Kennedy's Committee on Mental Retardation grew as funding for disability services and programs became available. Key legislation, program developments and organizational decisions are described for the time frame of 1970 through 2000.

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 …

Adapting Participatory Action Research To Include Individuals With Intellectual And Developmental Disabilities During The Covid-19 Global Pandemic, Kaitlyn P. Ahlers, Kara B. Ayers, Suzannah Iadarola, Rosemary B. Hughes, Hyon Soo Lee, Heather J. Williamson

Developmental Disabilities Network Journal

Participatory action research (PAR), or the inclusion of those affected by the issues being studied, is a growing area of emphasis in disability research. The principles of PAR align with those of the disability rights movement, such that full inclusion and “nothing about us without us” extends as much to research as it does to any other area of life. Moreover, PAR allows for meaningful input from people with intellectual and developmental disabilities (I/DD), which enhances the likelihood that research results are relevant and important to the disability community. As research activity resumes and is adapted to the context of …

Mental Health Supportive Services During Covid-19: Proposing An Online, Self-Guided Acceptance And Commitment Therapy Program For Parents In The Disability Community, Ty B. Aller, Elizabeth B. Fauth, Sarah Hodgskiss, Jeff Sheen, Michael E. Levin

Developmental Disabilities Network Journal

Parents of Children with Intellectual and Developmental Disabilities (I/DD) often experience stress, and the COVID-19 pandemic has likely increased their stress. In the current paper, we describe four things. First, we describe how mental telehealth treatments can effectively decrease parent stress, including programs that target behavior training and those that provide therapy. Teleheath programs are delivered by phone, computer, or fully online. Second, we describe challenges of these programs and explain how online, self-guided programs may help address these challenges. Third, we explain our online, self-guided program based in Acceptance and Commitment Therapy (ACT). ACT is a specific type of …

Perspectives Of Immigrant Families And Persons With Disabilities During Covid-19, Diana Rodriguez Lmsw, Kathleen Mcgrath Msw

Developmental Disabilities Network Journal

Background: The health, economic, social, political, and psychological consequences of COVID-19 have been deeply felt on a global level. Persons with disabilities, including those from Hispanic/Latino immigrant communities, have faced unique challenges during both the peak and fallout of the pandemic. Throughout both the United States and New York City, COVID-19 has disproportionately affected communities of color. However, the impact of COVID-19 on persons with disabilities among immigrant and communities of color is still unfolding.

Aims: In this paper, we aim to better understand the compounded stress of the COVID-19 pandemic experienced by immigrant families who have a child with …

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 …