Disability Studies Commons^™

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 …

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, …

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, …

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.