Medicine and Health Sciences Commons^™

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 …

Reaching Consensus On The Future Direction Of A Resource Center Within A Ucedd: A Quality Improvement Delphi Project, Emily J. Hickey Phd, Amy D. Whitehead Mpa, Rachel Weingarten Bs, Leann Smith Dawalt Phd

Developmental Disabilities Network Journal

Individuals with intellectual and developmental disabilities and their families need access to timely, quality information and assistance about relevant services and supports. Despite statewide systems of information and assistance for this population, there is a need for “in-the-moment” assistance for individuals and family members who participate in on-site research, training and or service delivery at the Waisman Center. The aim of this quality improvement project was to clarify the role of an internal Resource Center so as to align with the staff resources available and not duplicate statewide systems of support.

The Waisman Center at the University of Wisconsin-Madison the …

Beyond Representation: Partnerships, Intersectionality, And The Centering Of The Disability, Family, And Community Lived Experience, Lydia Ocasio-Stoutenburg Phd, Julieta Hernandez Phd, Lcsw, Douglene Jackson Phd, Otr/L, Faota

Developmental Disabilities Network Journal

The COVID-19 pandemic introduced a public health crisis, overlaying the disparities in healthcare access, treatment, and outcomes that were already prevalent in Black and Latino communities across the U.S., particularly persons with disabilities (PWD) at the intersection of racial and ethnic identities. In addition, the concurrent social and political climate mirrored the pandemic in its action of magnifying existing systemic inequities for historically marginalized populations, calling for institutions to galvanize efforts toward diversity, equity, and inclusion (EDI). Our University Center on Excellence in Disabilities (UCEDD) serves a range of families whose children have disabilities or complex health care needs and …

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, …

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 …

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 …