Medicine and Health Sciences Commons^™

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 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 …

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 …

How Healthcare Providers Can Support Timely Cervical And Breast Cancer Screenings For Individuals With Disabilities, Rachel Byers, Timothy Keady

All Current Publications

This fact sheet outlines how healthcare providers can apply current evidence and best practices in screening for cervical cancer and breast cancer in individuals with disabilities.

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, …

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 …

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 …

Using Quality Improvement (Qi)-Focused Evaluation To Redesign Direct Home- And Community-Based Services During The Covid-19 Public Health Emergency:, Marcia Moriarta, Anthony Cahill, Heidi Fredine

Developmental Disabilities Network Journal

Like many UCEDDs in the Developmental Disabilities (DD) network, the Center for Development and Disability at the University of New Mexico offers direct service programs in home and community settings. Before the start of the COVID-19 pandemic, services were delivered in-person to about 1,000 families across the state including clients with intellectual or developmental disabilities and/or from at-risk communities. In March 2020, due to the spread of COVID-19, a public health emergency was declared in New Mexico and home and community services were stopped throughout the state. This meant direct service programs at the Center had to turn to telehealth …

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 …

Mental Health Supportive Services During Covid-19: Proposing An Online, Self-Guided Acceptance And Commitment Therapy Program For Parents In The Disability Community, Ty B. Aller, Elizabeth B. Fauth, Sarah Hodgskiss, Jeff Sheen, Michael E. Levin

Developmental Disabilities Network Journal

Parents of Children with Intellectual and Developmental Disabilities (I/DD) often experience stress, and the COVID-19 pandemic has likely increased their stress. In the current paper, we describe four things. First, we describe how mental telehealth treatments can effectively decrease parent stress, including programs that target behavior training and those that provide therapy. Teleheath programs are delivered by phone, computer, or fully online. Second, we describe challenges of these programs and explain how online, self-guided programs may help address these challenges. Third, we explain our online, self-guided program based in Acceptance and Commitment Therapy (ACT). ACT is a specific type of …

The Impact Of Covid-19 On Disability Services And Systems: Perspectives From The Field, Ronda Jenson, John Tschida

Developmental Disabilities Network Journal

No abstract provided.

Application Of Coaching And Behavioral Skills Training During A Preschool Practicum With A College Student With Autism Spectrum Disorder, Summer Gunn, Tyra P. Sellers, Benjamin Lignugaris/Kraft

Special Education and Rehabilitation Counseling Faculty Publications

The current study looked at the effects of coaching using behavioral skills training (BST) outlined by Parsons, Rollyson, and Reid (2012). The participant was a young adult with autism spectrum disorder (ASD) enrolled in a preschool practicum course as part of the early childhood special education (ECSE) licensure program at the university that she attended. Impairment in social-pragmatics and executive functioning are associated with ASD, and are critical for engaging in an evaluative and analytic process necessary for success as an ECSE teacher. Coaching, using the BST model paired with observation and immediate feedback in the practicum environment, was used …

Effects Of Otitis Media On Language Development In Native Populations: A Review Of The Literature, Monica Malmgren

Undergraduate Honors Capstone Projects

From the time a fetus reaches about 20 weeks gestational age, its auditory system is functioning. Before we are ever born, we are exposed to sounds within our environment. With birth, we begin to interact with, experiment with, and learn to interpret the sounds around us. Before learning to speak, we are bombarded by the sounds of our language. An infant's head is known to perk up at the sound of a voice, a sudden noise, music... all the sounds of the environment, which is evidence that children are aware of the sounds around them before they are ever able …