Disability Studies Commons^™

Professional Development Strategies For Treating People With Idd And Mental Health Needs, Jennifer L. Mclaren, Elizabeth Grosso, Karen L. Weigle

Developmental Disabilities Network Journal

People with intellectual and developmental disabilities (IDD) experience significant health and mental health inequities and difficulties accessing care. There are few initiatives that train mental health professionals to care and advocate for the health and mental health care needs of people with intellectual and developmental disabilities.

We developed a Mental Health and Intellectual and Developmental Disabilities Professional Learning Community (PLC) with Clinical Education Teams (CET) training components through The National Center for START (Systemic-Therapeutic-Assessment-Resources-Treatment) Services^® to further educate providers in the United States. The National Center for START Services^® utilizes multiple training and collaboration forums to build the …

Peer-Mediated Family Support Project: Evaluation Of Changes In Family Quality Of Life, Preethy S. Samuel, Elizabeth Janks, Nia S. Anderson, Michael Bray, Christina Topolewski, Sharon Milberger

Developmental Disabilities Network Journal

The Family Quality of Life (FQOL) approach represents a paradigm shift from fixing to supporting people with intellectual/developmental disabilities (I/DD) by changing the focus from the individual to the family and highlighting strengths rather than deficiencies. Aging family caregivers of individuals with I/DD often encounter obstacles, including accessibility, acceptability, and affordability of services. Little is known about best practices to support aging families of adults with I/DD. Understanding how a state-wide peer-mediated family support project implemented in this study helped improve the FQOL of aging caregivers is important in broadening participation of other caregivers in these types of programs. To …

Interdisciplinary Treatment Approach To Youth With Intellectual Or Developmental Disabilities And Co-Occurring Mental Health Conditions, Ashley Greenwald, Erika Ryst, Diane D. Thorkildson, Lauren Brown

Developmental Disabilities Network Journal

Many individuals with Intellectual and/or Developmental Disabilities (IDD) have co-occurring mental health needs, yet service delivery options often do not allow for the integrated delivery of mental health treatment and social behavioral support services. Siloed treatment approaches often result in lack of collaboration between providers, increasing the difficulty in accessing comprehensive and coordinated treatments and reducing treatment potential and effective outcomes. Additionally, many service providers in behavioral support services are not trained to address significant mental health needs; similarly, providers of mental health services lack experience in modifying practices for differing cognitive needs. The lack of cross-training and cross-collaboration makes …

The Link Center: A Federally Funded Technical Assistance And Resource Center Aimed At Improving Mental Health Treatment And Access For People With I/Dd, Brain Injury, And Other Cognitive And Communication Differences., Stacy L. Nonnemacher, Jeanne Farr, Wendy Morris

Developmental Disabilities Network Journal

Although we do not have robust prevalence studies in the U.S., a recent meta-analysis estimated that 33.6% of individuals with intellectual and developmental disabilities (I/DD) have a mental health (MH) condition. We know that this prevalence may be an underrepresentation because of factors like diagnostic overshadowing. We also know that people with I/DD experience inequitable access to quality MH and preventive care. This highlights the chronic lack of and access to holistic, integrated care for individuals with I/DD, especially those who also have MH conditions. Consequently, an increasing number of individuals with I/DD experience MH crises and suffer adverse consequences. …

Project Attain: Advancing Trauma-Informed Care For Youth With Intellectual And Developmental Disabilities And/Or Gender Diverse Youth, Kady F. Sternberg, Charlotte E. Bausha, Charlotte Jones, Erin Knight, Crystal N. Steltenpohl, Rebecca R. Parton, Jennifer L. Mclaren, Erin R. Barnett

Developmental Disabilities Network Journal

Children with Intellectual and Developmental Disabilities (IDD) and/or gender diversity are at higher risk of experiencing trauma. Provider knowledge is lacking; trauma, disability, and LGBTQ+ resources are often siloed; and few providers screen for trauma in this population. This paper describes the design, delivery, and initial evaluation of Project ATTAIN (Access to Trauma-informed Treatment and Assessment for Neurodivergent and/or Gender-expansive Youth).

ATTAIN is an ongoing 5-year state-wide initiative aiming to assess readiness to engage in new roles and practices over time; provide state-wide training and consultation in trauma, disability, and LGBTQ+-informed practices; install screening and assessment of trauma exposure and …

Exploring Parent/Caregiver Perspectives Of Self-Determination And Its Impact On Mental Health In Adolescents With And Without Disabilities, Jessica Schuttler, Sydney Walls, Tyler Hicks, Karrie Shogren, Hannah Adams, Richard A Chapman

Developmental Disabilities Network Journal

Introduction. Parents and caregivers play key roles in supporting the development of self-determination and mental health needs in adolescents with and without disabilities. This study explored parent/caregiver perceptions of the relationships among mental health and self-determination constructs for youth with disabilities, across gender and disability status. Method. Parents/caregivers of adolescents with and without disabilities completed rating scales regarding adolescents’ self-determination status (Self Determination Inventory) and mental health symptoms (Behavior Assessment System for Children, 3^rd Edition). Bayesian analyses examined the relationships among self-determination and mental health status. Results. Results are mixed, indicating moderate to robust relationships for self-determination as a …

Building Neuro-Inclusive Community, Strengthening Mental Health: The Autism After 21 Utah Project, Sumiko T. Martinez, Anna Smyth, Ann C. Carrick

Developmental Disabilities Network Journal

Over two decades of research shows strong positive relationships are a consistently powerful indicator of wellbeing and resilience. However, the U.S. Surgeon General notes that loneliness and isolation is an epidemic in the U.S., and that it is exacerbated for individuals with physical and mental disabilities as well as those with isolating economic or environmental situations. A recent review shows that many autistic adults in particular face challenges in finding the connections they want and need. They also often have compounding mental health conditions, such as depression and mental illness, lower incomes, isolating home environments due to a lack of …

The Person Experiences Interview Survey: A Measure Addressing Ableism In Mental Healthcare For Patients With Intellectual And Developmental Disabilities, Micah Peace Urquilla

Developmental Disabilities Network Journal

Many People with Intellectual and Developmental Disabilities (IDD) also have mental health needs requiring the support of mental health service providers, yet they may experience barriers to full engagement in their care due to ableism. Ableism is a kind of prejudice that impacts People with IDD in many parts of life, even in mental health care. This article proposes how an adapted Patient Reported Experience Measure (PREM) can be a response to ableism, with an impact at three distinct yet interrelated levels that reflect the parties involved in the mental healthcare of People with IDD-MH: provider, caregiver, and patient.

At …

Acknowledgments, Matt Wappett

Developmental Disabilities Network Journal

No abstract provided.

Advancing Strength-Based Inclusive Mental Health Research In Intellectual And Developmental Disabilities, Luther Kalb, Joan B. Beasley

Developmental Disabilities Network Journal

No abstract provided.

Using Linked Digital Activity Schedules To Promote Cooperative Thematic Play, Vincent E. Campbell

All Graduate Theses and Dissertations, Spring 1920 to Summer 2023

Previous research has shown that children with autism spectrum disorder (ASD) may struggle to engage in social play, which may impact their willingness to engage in contextually appropriate cooperative play (Koegel et al., 2014). Researchers suggest that activity schedules targeting cooperative play may increase appropriate play for children with ASD (Brodhead et al.,2014; Pellegrino, 2018). However, previous studies did not include opportunities for interactive choice responding or the implementation of generic picture cues during script training. We investigated the impact of a linked digital activity schedule on promoting cooperative thematic play in children with ASD. Six children with ASD engaged …

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 …

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.

Who Is Accessing Ipse Programs? Examining The Demographics Of Students Enrolled In Inclusive Post-Secondary Education, Madison Heider

All Graduate Theses and Dissertations, Spring 1920 to Summer 2023

This initial survey study was designed to examine the demographics of students attending inclusive post-secondary (IPSE) programs for students with intellectual and developmental disabilities (IDD). IPSE programs are designed to deliver a similar, if not identical, collegiate experience to students with IDD as their peers without disabilities. Previous research has investigated IPSE programs and their impact, but there is limited information regarding student makeup. The researchers looked to identify the diversity of students beyond their disability categories; research questions surrounded student diversity, barriers to accessing IPSE programs, and what, if anything, programs do to increase diversity within their programs. The …

Perceptions Of Disabilities Among Native Americans Within The State Of Utah, Erica Ficklin, Melissa Tehee, Sherry Marx, Eduardo Ortiz, Megan E. Golson, Tyus Roanhorse

Psychology Student Research

Currently, little research exists on disabilities among Native American communities and no research exists on how Native Americans perceive disabilities, services currently available, and unmet needs. Understanding these key areas is essential to providing efficacious and culturally relevant care. To address this gap in the literature, we used Indigenous research methodology through sharing circles throughout the state of Utah to listen and amplify the voices of the Native communities. Participants shared how they conceptualize "disability," what they thought of current services, and how they thought the needs of Native persons with disabilities should be addressed. Four major themes emerged in …

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 …