Social and Behavioral Sciences Commons^™

A Scoping Review Of Health Research With Racially/Ethnically Minoritized Adults With Intellectual And Developmental Disabilities, Heather J. Williamson, Tara Chico-Jarillo, Samantha Sasse, Leticia Rennie, Jennifer R. Etcitty, Carol L. Howe, Michele Sky Lee, Julie S. Armin

Developmental Disabilities Network Journal

Living with intersectional identities, having a disability, and being a member of a racial or ethnic minoritized group in the U.S., contributes to marginalization that may result in health disparities and health inequities. The purpose of this scoping review is to describe health research regarding adult racial/ethnic minoritized individuals in the U.S with intellectual and developmental disabilities (I/DD). Eight electronic databases were searched to identify literature on the topic published since 2000. Of the 5,229 records, 35 articles were included in the review. Eligible studies included research conducted in the U.S., published in English, and research focused on adults with …

Differences Among Family And Professional Guardians: A Statewide Survey Of Characteristics, Training, And Practices Related To Decision-Making, Kristin Hamre, Derek Nord

Developmental Disabilities Network Journal

This cross-sectional study sought to examine the differences between family and professional guardians across personal and role characteristics, training received, and their inclusion of people they serve in decision making. A total of 237 subjects serving as guardian to adults in the state of Indiana completed an online survey. Results showed group differences across race, education, as well as diagnosis and age of those served. Overall, training was limited across both groups, and family guardians received significantly less training across several topics. Finally, family and professional guardians were found to significantly differ in their willingness to allow people they serve …

Factors Impacting Access To Community Services By People With Intellectual Disabilities, Caitlin Crabb, Randall Owen, Tamar Heller

Developmental Disabilities Network Journal

Background: People with intellectual disabilities increasingly live in smaller community settings rather than institutional settings. Home- and community-based services (HCBS) are a type of long-term care in which services and supports are provided in people’s homes and communities. HCBS are essential for people with disabilities to remain in the community.

Method: The 2015-2016 National Core Indicators survey data, along with other datasets, were used to determine how factors impacted service utilization and additional services needed for adults with intellectual and development disabilities (I/DD) in the US. Three groups of factors were used: individual, interpersonal, and public policy factors.

Results: Variables …

Parents’ Perceptions Of The Philly Goat Project’S All Abilities Ramble: A Qualitative Study Of Animal-Assisted Intervention For Intellectual And Developmental Disorders, Patricia Flaherty-Fischette, Jenée Lee, Yvonne D'Uva-Howard, Elizabeth P. Cramer, Karen Krivit, Sarah Meehan

Developmental Disabilities Network Journal

Individuals with intellectual and developmental disabilities (IDD) are a growing population. Considering the wide diversity in IDD and the financial burden of traditional treatment modalities, Animal-Assisted Interventions (AAI) has emerged as an innovative and non-traditional treatment for individuals with a range of disabilities, including individuals with IDD. To the authors’ knowledge, the present study was one of the first to explore a goat-assisted therapy experience for children with IDD. This study explored the experiences of 23 children with the All Abilities RAMble – a goat-assisted therapeutic activity offered by the Philly Goat Project (PGP). Key themes in our study included …

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 …

Applying The Self-Determined Learning Model Of Instruction To The Psychotherapeutic Context For People With Intellectual/Developmental Disabilities, Richard Chapman, Jessica Schuttler, Karrie Shogren, Sydney Walls, Hannah Adams, Aderonke O. Oyetunji

Developmental Disabilities Network Journal

The Self Determined Learning Model of Instruction is an evidence-based intervention for supporting self-directed goal setting and problem solving. Traditionally, the SDLMI has not been applied in the psychotherapeutic context, however we propose that the SDLMI is an approach that could be integrated into such a context to support self-determination, goal setting, and goal attainment. In this paper, we specifically focus on connections between the SDLMI and cognitive behavior therapy (CBT) and how the approaches can be used jointly, during psychotherapy to support teens and young people with intellectual and developmental disabilities to set, work towards, and reach goals. Implications …

Reimagining Disability: A Call To Action, Paritosh Joshi, Julia Pappageorge

Developmental Disabilities Network Journal

This article focuses on how the medical profession, organizations, and universities should incorporate the social model of disability into their regulations and policies to advance justice for individuals with disabilities. Traditionally, disability has been viewed through the medical model, which postulates that one’s individual body or mind is medically impaired and diminishes the person’s quality of life. The model overemphasizes individual difference or disability diagnosis as something that should be treated at an individual level through medical intervention, and ignores social factors that impact the development of physical and mental conditions. Moreover, this pervasive attitude towards disability permeates institutions and …

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 …

Caregiver Health: Having A Child With Asd And The Impact Of Child Health Insurance Status, Kristin Hamre, Derek Nord, John Andresen

Developmental Disabilities Network Journal

This study aims to understand the health outcomes of parents with children with autism spectrum disorder (ASD) and the interactive effect of child health insurance status. The study utilized 2014-2018 pooled National Health Interview Survey data to construct weighted national estimates and construct main and interaction effect logistic regression models. Findings show parents of children with ASD experienced significantly poorer health compared to parents of children without autism. Insurance status was found to significantly interact with child ASD status. Compared to parents of children without ASD that used private insurance, parents with a child with ASD who used private insurance, …

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. …

Acknowledgments, Matt Wappett

Developmental Disabilities Network Journal

No abstract provided.

Advancing Diversity, Equity, And Inclusion In Developmental Disabilities: The Essential Role Of Leadership For Cultural And Linguistic Competence, Tawara D. Goode, Oluwatosin Ajisope, Sharonlyn Harrison, Betelhem Eshetu Yimer, Deborah Perrry, Wendy Jones

Developmental Disabilities Network Journal

ABSTRACT

There is a clear and compelling need to approach equity, diversity, and inclusion not as problems to be solved,but rather as opportunities to be realized. The Developmental Disabilities Bill of Rights and Assistance Act of 2000,states the need for cultural competence, specifically to ensure that supports and services “are provided in a manner that assure maximum participation and benefit for persons with IDD.” Cultural and linguistic competence (CLC) are evidence-based or proven practices that reduce disparities, advance diversity, and promote equity. Achieving CLC requires strong and informed leadership to spark the necessary changes within systems, organizations, and practice. …

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’ …

An Interactive Training Model To Promote Cultural Humility For Early Childhood Professionals, Anjali G. Ferguson, Chimdindu Ohayagha, Jackie Robinson Brock

Developmental Disabilities Network Journal

The disability population in the United States has grown, with an estimated 2.6 million households having at least one child with a disability in 2019 (Young, 2019). Racially minoritized children disproportionately represent disability categories with Black and Indigenous children being overdiagnosed with emotional disturbance disabilities (Oswald & Coutinho, 2001). Further, minoritized children often experience greater rates of complex trauma (Horowitz, Weine, & Jekel, 1995) and this exposure significantly impacts minoritized children’s mental health (Flannery, Wester, & Singer, 2004). Included in these social determinants of health are the impacts of racism and racial trauma. Racism has been associated with mental health …

Disability Decolonized: Indigenous Peoples Enacting Self-Determination, Nathan J. Rabang, Amy E. West, Eric Kurtz, Jim Warne, Vanessa Y. Hiratsuka

Developmental Disabilities Network Journal

Populations researched often have little if any input in the means of data collection, analysis, or authorship of the findings published. They are excluded from participating in the scientific methods even though they are the subject of the content that is being produced. This is true for Indigenous populations and the disability community around the globe. Researchers usually use colonial methodology that does not encompass the values of these communities or have their well-being in mind. This paper examines the history of colonization and how it has infiltrated science and inhibits self-determination of Indigenous peoples. Indigenous communities need to have …

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 …

Exploring Barriers To Diversity, Equity, And Inclusion In Communication Sciences And Disorders Students, Elizabeth Cleveland, Maysoon Biller, Natalie Benafield, Abigail Moss, Mackenzie Jordan, Mary Yang

Developmental Disabilities Network Journal

Introduction: This study investigated university students’ views of barriers and aids toward success in a communication sciences and disorders (CSD) program. The goal of this 11-question survey was to determine if there was a difference in types of barriers or aids between Black, Indigenous, and People of Color (BIPOC) students and White students.

Method: The Communication Sciences and Disorders - Diversity, Equity, and Inclusion (DEI) Survey participants were 62 speech-language pathology and audiology undergraduate and graduate students from a variety of backgrounds. Analyses identified students’ views toward barriers and aids to success in the university program as well as their …

Access To Services For New Americans With Intellectual And Developmental Disabilities: Building Capacity Through The Ramirez June Initiative, Cynthia S.B. Stewart, Carmel Lulihi, Laura González-Murphy, Jacqueline Hayes

Developmental Disabilities Network Journal

New Americans with intellectual and developmental disabilities (IDD) are a significantly underserved community in New York State (NY) facing complex barriers accessing IDD services and fully integrating into their communities. New American communities lack connections with IDD service systems and struggle to find culturally and linguistically accessible information about disability services and resources. New Americans may be fearful of engaging with service providers, especially if they lack lawful immigration status and are undocumented. In acknowledgement of these barriers, NY implemented an initiative to create a navigator model that is the first of its kind in the nation. The Initiative is …

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

Developmental Disabilities Network Journal

No abstract provided.

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.