Digital Commons Network^™

Opportunities, Barriers, And Recommendations In Down Syndrome Research., James A. Hendrix, Angelika Amon, Leonard Abbeduto, Stamatis Agiovlasitis, Tarek Alsaied, Heather A. Anderson, Lisa J. Bain, Nicole Baumer, Anita Bhattacharyya, Dusan Bogunovic, Kelly N. Botteron, George Capone, Priya Chandan, Isabelle Chase, Brian Chicoine, Cécile Cieuta-Walti, Lara R. Deruisseau, Sophie Durand, Anna Esbensen, Juan Fortea, Sandra Giménez, Ann-Charlotte Granholm, Laura J. Hahn, Elizabeth Head, Hampus Hillerstrom, Lisa M. Jacola, Matthew P. Janicki, Joan M. Jasien, Angela R. Kamer, Raymond D. Kent, Bernard Khor, Jeanne B. Lawrence, Catherine Lemonnier, Amy Feldman Lewanda, William Mobley, Paul E. Moore, Linda Pollak Nelson, Nicolas M. Oreskovic, Ricardo S. Osorio, David Patterson, Sonja A. Rasmussen, Roger H. Reeves, Nancy Roizen, Stephanie Santoro, Stephanie L. Sherman, Nasreen Talib, Ignacio E. Tapia, Kyle M. Walsh, Steven F. Warren, A Nicole White, Guang William Wong, John S. Yi

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome (DS). These advances are the result of both pre-clinical and clinical research but much about DS is still poorly understood. In 2020, the NIH announced their plan to update their DS research plan and requested input from the scientific and advocacy community.

OBJECTIVE: The National Down Syndrome Society (NDSS) and the LuMind IDSC Foundation worked together with scientific and medical experts to develop recommendations for the NIH research plan.

METHODS: NDSS and LuMind IDSC assembled over 50 experts across …

Evaluating Preventative Care And Post-Hospitalization Primary Care Follow-Up In Adults With Intellectual And/Or Developmental Disabilities, Jason Xenakis

NYMC Student Theses and Dissertations

Post-Hospitalization Primary Care Follow-Up Abstract

Title: Characteristics that are associated with primary care follow-up and discharge summary receipt post-hospitalization in adults with intellectual and/or developmental disabilities.

Background: Transition from an inpatient to an outpatient setting is a high risk time for patients. Studies in the general population find that poor post-hospitalization primary care follow-up results in higher rates of readmissions – a widely used indicator of healthcare quality. There is no research that evaluates post-hospitalization primary care follow-up or discharge summary receipt in the IDD population.

Objective: To explore the demographic, socioeconomic, and clinical characteristics that are associated with whether …

The Preferences Of Exercise And Physical Activity In Individuals With An Intellectual Disability, Zachary J. Burt

MSU Graduate Theses

The purpose of this study was to explore the preferences of exercise and physical activity in individuals with an intellectual disability. It took place during Bear Play, a physical activity program geared towards working with individuals with a disability at Missouri State University. This project was facilitated through the partnership of Missouri State University's Kinesiology department and the Arc of The Ozarks. A convenience sample was drawn from individuals participating in the program during the 2015-2016 academic year. Each participant was asked to complete a survey. Data were collected by using a survey administered on an IPAD and covered many …

Is Proxy Consent For An Invasive Procedure On A Patient With Intellectual Disabilities Ethically Sufficient?, Sonya Charles, Stephen Corey, Peter Bulova

Philosophy and Religious Studies Department Faculty Publications

No abstract provided.

Animal Assisted Therapy In A Special Needs Dental Practice: An Interprofessional Model For Anxiety Reduction, Caren M. Cajares, Carolyn M. Rutledge, Tina S. Haney

Nursing Faculty Publications

Purpose: Individuals with intellectual and developmental disabilities (IDD) suffer from poor oral hygiene and periodontal disease that may predispose them to systemic diseases. In order to receive dental care, the assistance of a certified registered nurse anesthetist (CRNA) is often needed. The role of the CRNA is to provide sedation to reduce the high level of anxiety demonstrated by many individuals with intellectual disabilities in the dental suite. However, this can become a challenge with patients that are anxious when they arrive. The purpose of this paper is to describe an interprofessional dental team that added a certified therapy dog …

Healthcare For Persons With Intellectual And Developmental Disability In The Community, David A. Ervin, Brian Hennen, Joav Merrick, Mohammed Morad

Pediatrics Faculty Publications

INTRODUCTION: While there has been impressive progress in creating and improving community healthcare delivery systems that support people with intellectual and developmental disabilities (IDD), there is much more that can and should be done.

METHODS: This paper offers a review of healthcare delivery concepts on which new models are being developed, while also establishing an historical context. We review the need for creating fully integrated models of healthcare, and at the same time offer practical considerations that range from specific healthcare delivery system components to the need to expand our approach to training healthcare providers. The models and delivery systems, …

Primary Care: Mental And Behavioral Health And Persons With Intellectual And Developmental Disabilities, David A. Ervin, Ashley Williams, Joav Merrick

Pediatrics Faculty Publications

INTRODUCTION: There are multiple ways to address the mental and behavioral health needs of people with intellectual and developmental disabilities (IDD).

METHOD: In this paper, we do not argue for a particular approach or set of approaches, but instead review the benefits of integrating mental and behavioral health supports with primary healthcare based primarily on our experience in and understanding of healthcare systems in the United States. It is estimated that between 35 and 40% of people with IDD also live with psychiatric disorders. NADD, an association for persons with developmental disabilities and mental health needs in the US holds …

Primary Care: Mental And Behavioral Health And Persons With Intellectual And Developmental Disabilities, David A. Ervin, Ashley Williams, Joav Merrick

Public Health Faculty Publications

Introduction: There are multiple ways to address the mental and behavioral health needs of people with intellectual and developmental disabilities (IDD).

Method: In this paper, we do not argue for a particular approach or set of approaches, but instead review the benefits of integrating mental and behavioral health supports with primary healthcare based primarily on our experience in and understanding of healthcare systems in the United States. It is estimated that between 35 and 40% of people with IDD also live with psychiatric disorders. NADD, an association for persons with developmental disabilities and mental health needs in the US holds …

Healthcare For Persons With Intellectual And Developmental Disability In The Community, David A. Ervin, Brian Hennan, Joav Merrick, Mohammed Morad

Public Health Faculty Publications

Introduction: While there has been impressive progress in creating and improving commu- nity healthcare delivery systems that support people with intellectual and developmental disabilities (IDD), there is much more that can and should be done.

Methods: This paper offers a review of healthcare delivery concepts on which new models are being developed, while also establishing an historical context. We review the need for creating fully integrated models of healthcare, and at the same time offer practical consid- erations that range from specific healthcare delivery system components to the need to expand our approach to training healthcare providers. The models and …

Hearing Health In Utah Special Olympics Athletes Compared To Special Olympics Athletes Worldwide: A Prevalence Study In Individuals With Intellectual Disabilities, Lisa Moses Mullins

Theses and Dissertations

The Special Olympics Healthy Athletes initiative promotes wellness of the athletes with intellectual disabilities and education for medical professionals. Healthy Athletes has created a hearing screening program, Healthy Hearing, to help athletes with intellectual disabilities get the otological and audiological care they need. This program promotes a healthy hearing lifestyle and educates medical professionals regarding the need of health care for the intellectually disabled population. The physiologic, otologic, and audiologic abnormalities often occurring in the intellectually disabled population bring special attention for the need to determine the prevalence rate of hearing loss among the athletes participating in Special Olympics events. …