Social and Behavioral Sciences Commons^™

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.

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 …

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 …

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 …

A Self-Advocate’S Perspective On The Covid-19 Pandemic, D.R. Reff

Developmental Disabilities Network Journal

This article summarizes the experience of a self-advocate from Idaho during the COVID pandemic. This article addresses issues of social isolation, mental health, and social supports.

Acknowledgments, Matthew T. Wappett Ph.D.

Developmental Disabilities Network Journal

No abstract provided.

The Impact Of Covid-19 On Disability Services And Systems: Perspectives From The Field, Ronda Jenson, John Tschida

Developmental Disabilities Network Journal

No abstract provided.

Changing Needs Of Individuals With Disabilities In The Time Of Covid-19 As Observed By A Family Navigation Program In Miami, Fl, Gabriella Llano, Allison Kumnick, Jean-Paul Bryant Ms, Nancy Torres Ms, Jeffrey Brosco Md, Phd, Maite Schenker Phd

Developmental Disabilities Network Journal

The Family Navigator Program (FNP) is designed to help families navigate the complex system of services available to people with intellectual and developmental disabilities (I/DD), chronic health conditions, mental health issues, and other special health care needs. Based at the Mailman Center for Child Development at the University of Miami, the FNP is free and available to all families in South Florida. Most families enrolled in the FNP are receiving medical services from a university clinic; however, the program also accepts referrals from outside agencies and self-referrals. The aim of this study was to investigate the needs of families enrolled …

“It’S An Opportunity To Get Opportunities”: A Brief Report On The Working Lives Of Individuals With Intellectual And Developmental Disabilities During The Covid-19 Pandemic, James Sinclair, Carly B. Gilson, Mary Whirley, Yi-Fan Li

Developmental Disabilities Network Journal

The Covid-19 pandemic has impacted countless individuals, including those who experience intellectual and developmental disabilities (IDD). Even amid a pandemic, for many individuals, working continues to be a critically important aspect of their life, providing opportunities to accomplish their desired quality of life. Currently, limitations exist to understanding both the working lives of individuals with IDD, but also how individuals with IDD make meaning from their work during a pandemic. Using a psychology of working theory (PWT; Blustein, 2006), this research brief summarizes a qualitative study on the working experiences of individuals with IDD. This study included interviews with six …

Autistic College Students And Covid-19: Anxiety, Support Needs And Responses By Specialized Programs, Jessica Monahan, Laurie Ackles, Amy D. Edwards, Brian Freedman, Pamela Withers Lubbers, Sara Sanders Gardner, Cherie A. Fishbaugh, Jane Thierfeld Brown

Developmental Disabilities Network Journal

Providing resources and support to college students during the COVID-19 global pandemic has produced unique challenges for all students, particularly those with autism. In March 2020, halfway through the spring term, the COVID-19 global pandemic forced most institutions of higher education across the country to move all instruction and support to an online, remote format, including those for students with autism. Colleges and autism support programs are now grappling with how to effectively support students amid a global pandemic. Yet there is little information available about how students’ needs have changed with this new environment. In this exploratory study, 76 …

Using Telehealth To Adapt Service Delivery For Children During The Covid-19 Pandemic, Maureen Russell, Cathron Donaldson, Jill Pleasant, Kelly Roberts

Developmental Disabilities Network Journal

Staff from the Institute for Human Development (IHD) at Northern Arizona University have provided evaluations for children with developmental disabilities (DD) in Arizona communities for over 20 years. These evaluations include Developmental Evaluations, Augmentative and Alternative Communication (AAC) evaluations, and evaluations for eligibility for Part C of IDEA (Individuals with Disabilities in Education Act) early intervention services. Following the evaluations, IHD staff may provide interventions that consist of training, coaching, and direct services.

Evaluations and follow-up interventions have historically been provided in homes, the community, or a clinic setting by interdisciplinary teams that consist of two or more of the …

Coming Together During Covid-19: A Mixed Methods Exploratory Study On Collective Efficacy In A State Developmental Disabilities Network, Arden D. Day, Michele Sky Lee, Ronda Jenson, Erica Mcfadden, Maureen Russell, Kelly Roberts, John Mcdermott, Nicholas Blum

Developmental Disabilities Network Journal

Background: Collective efficacy (CE) is a group’s shared belief that through their united efforts they can overcome challenges to achieve common goals (Bandura, 1993; 1997). CE has been shown to be related to professional growth, stress reduction, and overall collaborative impact in studies of groups responding to ongoing challenges as well as unforeseen circumstances (i.e. teachers, first-responders, and community responses to natural disasters) (Benight, 2004; Donohoo, 2016; Prati et al., 2011). COVID-19 has forced organizations serving individuals with disabilities to come together to adapt and change the ways in which they serve the disability community.

Objective: This study examines …

Family Caregiving During The Covid-19 Pandemic, Sharon Milberger, Christina Marsack-Topelewski, Elizabeth Janks, Preethy S. Samuel

Developmental Disabilities Network Journal

Background: The Coronavirus Disease-2019 (COVID-19) pandemic has taken a disproportionate toll on people with intellectual and developmental disabilities (I/DD) as well as their family caregivers. This is especially true for older family caregivers, many of whom assume dual or compound caregiving roles, and provide care as they undergo their own aging experiences. This research brief presents findings from family caregivers of adults with I/DD to better understand how the COVID-19 pandemic has affected their lives. Method: Thirty family caregivers from across the state participated in a one-hour special COVID-19 virtual discussion group. All participant identifiers were deleted from a …

Using Quality Improvement (Qi)-Focused Evaluation To Redesign Direct Home- And Community-Based Services During The Covid-19 Public Health Emergency:, Marcia Moriarta, Anthony Cahill, Heidi Fredine

Developmental Disabilities Network Journal

Like many UCEDDs in the Developmental Disabilities (DD) network, the Center for Development and Disability at the University of New Mexico offers direct service programs in home and community settings. Before the start of the COVID-19 pandemic, services were delivered in-person to about 1,000 families across the state including clients with intellectual or developmental disabilities and/or from at-risk communities. In March 2020, due to the spread of COVID-19, a public health emergency was declared in New Mexico and home and community services were stopped throughout the state. This meant direct service programs at the Center had to turn to telehealth …

Assessing And Mitigating Risk For Applied Behavior Analysis Providers During A Pandemic, Joshua B. Plavnick Phd, Krista Clancy, Sharon Milberger

Developmental Disabilities Network Journal

The COVID-19 pandemic has significantly impacted the extent to which human service providers can safely deliver close-contact therapies in which social distancing cannot occur. Applied behavior analysis (ABA) therapy for children with autism spectrum disorder (ASD) is one such example, with the pandemic creating several barriers to safely delivering this essential service. The present paper describes the development and administration of a risk assessment and mitigation toolkit that was designed for ABA providers to make decisions about how to identify and mitigate risk in delivering therapeutic services to children with ASD. The toolkit includes considerations for clients, other household members, …