Social Policy Commons^™

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 …

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, …

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 Perry, 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 …

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

NA

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.

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.

Family Perspectives On Developmental Monitoring: A Qualitative Study, Sarah Behrens, Evan Dean, Marisol Torres

Developmental Disabilities Network Journal

Developmental monitoring, an ongoing process to identify children at risk for developmental delays, is an essential component to the identification of a developmental disability in young children. In collaboration with families, medical professionals are expected to monitor the development of a child; however, current research focuses on screening with less attention on developmental monitoring and the role of the family. Here, we show the experiences of families with medical professionals specific to developmental monitoring and how families obtain and develop knowledge on child development. We analyze qualitative data from a sample of family caregivers using semi-structured interviews. With a thematic …

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, …

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 …

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 …

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.