Disability Studies 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 …

State Oversight Of Polypharmacy And Psychotropic Medication Use Among Individuals With Intellectual And Developmental Disabilities: A Three State Case Study, James Houseworth, Kami L. Gallus, Tiffany Greene, Steven R. Erickson, Jennifer Lynn Jones, Laura Vegas

Developmental Disabilities Network Journal

Adults with intellectual and developmental disabilities (IDD) are prescribed more medications than the general population, placing them at significantly higher risk for issues due to taking multiple medications (polypharmacy). There are currently no clear national standards for the administration of medications given this risk. The following policy analysis explores state policies related to prescription medication oversight. This analysis pays particular attention to the use of medications that alter one’s mental state (psychotropics) among people with IDD who receive home and community-based services (HCBS) in the United States. The article outlines current efforts implemented to reduce medication-related risks for people with …

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 …

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, …

Contributions Of Community Organizations To Personal Outcomes For People With Intellectual And Developmental Disabilities: A Study Of Special Olympics Program Participation, Seb M. Prohn, Parthenia Dinora, Kayla Diggs Brody

Developmental Disabilities Network Journal

Community organizations can enhance the intellectual and developmental disability (I/DD) service system’s ability to improve the health, wellness, and participation of people with I/DD. This study added an item about Special Olympics (SO) participation to the 2019-2020 National Core Indicators In-Person Survey to predict active SO participation and to determine whether personal outcomes differed for SO participants. Results of a multinomial logistic regression showed that people who were younger or who did not require mobility aids were more likely to participate in SO. Compared with people who never or formerly participated in SO, current SO athletes had better personal outcomes. …

Cultural Humility And Cultural Brokering In Professional Training: Insights From People Of Color (Poc) And Persons With Disabilities (Pwd), Victoria Filingeri, Heather M. Mendez, Alisa Ssu Yu Lin, Gyasi Burks-Abbott, Amy Szarkowski, Jason Fogler

Developmental Disabilities Network Journal

This conceptual paper reflects the collaborative work of LEND trainees and faculty exploring the need to shift from “cultural competencies” to “cultural humility” in training programs. The authors draw on their lived experiences as members of racially/ethnically marginalized groups, members of the disability community, and advocates for equity in accessibility. Collectively, the authors highlight some of the challenges and opportunities in supporting diverse trainees in professional- and discipline-specific training programs. and in the provision of services the trainees provide to care-recipients across a variety of fields. This paper includes a series of case vignettes in order to: examine individual authors’ …

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 …

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 …