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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 …

Toward An Equity-Driven Conceptual Model Of Covid-19 Vaccine Decision-Making For People With Idd, Lydia Ocasio-Stoutenburg, Reese Triana, Shelly Baer, Jairo Arana, Ana C. Sale, Douglene Jackson, Michelle Schladant, Nastasia Boulos, Grace Dima, Jeffrey Brosco

Developmental Disabilities Network Journal

COVID-19 presented a public health emergency in the U.S., resulting in severe illness, hospitalizations, high mortality rates, and long-term adverse health care conditions. Several studies examined the disparities in transmission rates, barriers to care, and negative health outcomes for persons with disabilities, particularly people with intellectual and developmental disabilities (I/DD). While data revealed similar trends among Black, Hispanic or Latino/a/x/e, Native, Indigenous, and Asian people, outcomes are compounded for people of color with I/DD. Several historical, pervasive, systemic, structural, and attitudinal barriers have constrained healthcare access and adequate treatment, instigating feelings of distrust among those in systems of care. Although …

Health And Quality Of Life Among People With Intellectual And Developmental Disabilities And Direct Support Professionals During The Early United States Covid-19 Pandemic, Erin Vinoski Thomas, Bridgette M. Schram, Sombal Bari, Rachel Odunlami, Kristina M. Ormond, Sydnie E. Smith

Developmental Disabilities Network Journal

People with intellectual and developmental disabilities (IDD) and the direct support professionals (DSPs) who support them have faced unique risks to their health and quality of life (QoL) throughout the COVID-19 pandemic. We sought to understand how COVID-19 has influenced QoL and overall well-being among these populations. We conducted a Rapid Qualitative Inquiry study with a sample of people with IDD and DSPs (n = 18) to gain deeper perspectives about QoL and well-being during the pandemic. Participants described that changes in QoL were typically negative and influenced primarily by reduced socialization and impacts on health and independence; however, …

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 …

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 …

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 …

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.

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 …

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 …

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 …

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.

Parents Of Children With Disabilities In The Early Months Of Covid-19: Knowledge, Beliefs And Needs, Mary Beth Bruder Phd, Tara M. Lutz Phd, Kelly E. Ferreira Phd

Developmental Disabilities Network Journal

COVID-19 has impacted families across the world. Besides the huge task of keeping their children and themselves healthy, families had more responsibilities such as supporting their children’s learning at home when they could not go to school. We asked 457 parents of children with disabilities about their knowledge, beliefs, and needs during the first few months of the pandemic. The parents reported a decrease in formal supports available to them. They also reported a decrease in being able to access informal supports. The parents stated concerns about the health and well-being of their families, the loss of jobs and income, …

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 …