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 …

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 …

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’ …

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 …

An Assessment Of 50 State Early Hearing Detection And Intervention Websites: Is Needed Information Being Provided For Parent Decision Making?, Nichole Westin, Donna Sorkin

Journal of Early Hearing Detection and Intervention

Growth of the Internet as an information resource has provided expanded opportunities for families to easily gather information on a range of topics, including health related topics. State Early Hearing Detection and Intervention (EHDI) websites and other electronic data sources are an important opportunity to support families seeking information on options for their children who have been identified as deaf or hard of hearing. A review was undertaken between August and September 2021 of the 51 US EHDI (state and DC) websites and related information (such as links to others’ sites) to determine if information that is specifcally discussed in …

Training The Next Generation Of Practitioners In Early Intervention And Telepractice: Three University Models, K. Todd Houston, Lauri Nelson, Kristina Blaiser

Journal of Early Hearing Detection and Intervention

The COVID-19 pandemic continues to shape the provision of family-centered early intervention services for children who are Deaf or Hard-of-Hearing and their families. In programs, schools, and centers, direct in-person contact with families have been significantly curtailed as a means to limit the exposure to and spead of the virus. Emergency remote learning has lead to an increase in telepractice, also referred to as teleintervention, as the designated model of service provision. Most early interventionists, speech-language pathologists, and teachers of the Deaf were not sufficiently trained to suddenly implement emergency remote teaching or telepractice services, but service providers had no …

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, …

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 …

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.

Increasing Access To Augmentative And Alternative Communication Services For People With Complex Communication Needs During Covid-19 And Beyond, Cristina L. Pujol, Anamaria Nevares, Michelle Schladant

Developmental Disabilities Network Journal

The COVID-19 global pandemic has affected the disability network across the world. In the United States, there are millions of people who cannot use their natural speech to communicate. Augmentative and alternative communication (AAC), a form of assistive technology (AT), helps people with complex communication needs (CCNs) to communicate with others. Examples of AAC include printed pictures and speech-generating devices. A team of professionals work together with the person with CCNs and their caregivers to choose the right type of AAC. Often, people with CCNs need face-to-face and ongoing AAC support. Prior to the COVID-19 pandemic, this population already faced …

Evolution Of A Multi-Layered World Of Science To Benefit Children With Hearing Loss, Ellen Rhoades, Rachel Glade

Journal of Early Hearing Detection and Intervention

This is a brief but broad narrative and non-systematic review of developments that led up to how 21^st century digital technology and translational research influenced, in particular, cognitive psychology and our improved understanding of mental resources among children with hearing loss. In turn, systemic multi-disciplinary research findings gave birth to Auditory Cognitive Neuroscience (ACN). Three broad constructs unique to ACN, i.e., auditory attention, effortful listening, and auditory fatigue, are then described in relation to children with hearing loss. This review concludes with a brief examination of future opportunities for researchers and clinicians who can ensure that children with hearing …

Listen To Us: Dad-Endorsed Strategies For Ehdi Professionals, Holly F. Pedersen Dr., Jerusha Olthoff

Journal of Early Hearing Detection and Intervention

While fathers play an increasingly important role in today’s families, there is an imbalance of research regarding fathers of children with disabilities compared to mothers. Modest research with mothers of children who are deaf/hard of hearing exists; however, very limited research is available specific to fathers of that population. With the advent of newborn hearing screening, the number of children who have hearing loss being identified within the first six months of life has significantly increased. Thus, the number of fathers participating in EHDI services has also increased. Seeking to answer the question, What do fathers’ experiences in the early …

Maternal Anxiety Associated With Newborn Hearing Screening, Stephen J. Tueller, Karl R. White

Journal of Early Hearing Detection and Intervention

The purpose of this study was to determine if newborn hearing screening increases maternal anxiety. Mothers whose infants were screened for hearing were asked how worried they were prior to hospital discharge and again six weeks later. They were also asked if they were more concerned about their baby’s hearing than they were about other aspects of the infant’s health and behavior.

Results showed that mothers worried as much or more about many other aspects of their infants’ health and behavior as about hearing. Mothers whose infants had a false positive screening result were initially more worried about hearing than …