Sisirak, J. & Marks, B. (2015). Health and Wellness Strand: Recommendations From National Goals Conference 2015. Inclusion, 3(4), 242-249, http://aaiddjournals.org/doi/abs/10.1352/2326-6988-3.4.242.
Although a variety of health and wellness initiatives have emerged in the past decade, people with intellectual and developmental disabilities (IDD), their caregivers, and advocates still are facing remarkable challenges in staying healthy and receiving appropriate health services. The National Goals 2015 Conference provided a unique platform and an opportunity to summarize the current state of knowledge, identify national goals in research, practice, and policy, and set the stage for the future directions in health and wellness in IDD field. This article presents an outline to improve the health of people with IDD. The goals identify major health and wellness issues and solutions proposed by a group of disability researchers, policy specialists, advocates, health care providers, and service providers with the aim to set forth an agenda for national, state, and local action to improve the health of people with IDD and include them fully in appropriate health systems.
Ailey, S. H. & Marks, B. (2016). Technical Standards for Nursing Education Programs in the 21st Century. Rehabilitation Nursing. doi: 10.1002/rnj.278
Purpose The Institute of Medicine (IOM, 2000; 2002) exposed serious safety problems in the health system and called for total qualitative system change. The IOM (2011; 2015) also calls for improving the education of nurses to provide leadership for a redesigned health system. Intertwined with improving education is the need to recruit and retain diverse highly qualified students. Disability is part of diversity inclusion, but current technical standards (nonacademic requirements) for admission to many nursing programs are a barrier to the entry of persons with disabilities. Rehabilitation nurse leaders are in a unique position to improve disability diversity in nursing. The purpose of this paper is to discuss the importance of disability diversity in nursing.
Design The history of existing technical standards used in many nursing programs is reviewed along with examples.
Methods Based on the concept that disability inclusion is a part of diversity inclusion, we propose a new model of technical standards for nursing education.
Conclusion and Clinical Relevance Rehabilitation nurse leaders can lead in eliminating barriers to persons with disabilities entering nursing.
Carli Friedman, Aleksa L Owen
Siblings of disabled peoples’ attitudes toward prenatal genetic testing and disability: A mixed methods approach. Disability Studies Quarterly, 36(3).
We used the phenomenon of prenatal genetic testing to learn more about how siblings of disabled people understand prenatal genetic testing and social meanings of disability. By interweaving data on siblings’ conscious and unconscious disability attitudes and prenatal testing with siblings’ explanations of their views of prenatal testing we explored siblings’ unique relationships with disability, a particular set of perspectives on prenatal genetic testing, and examined how siblings’ decision-making processes reveal their attitudes about disability more generally. In doing so we found siblings have both personal and broad stakes regarding their experiences with disability that impact their views.
January 5, 2016
This study investigated the extent of racial and ethnic disparities in the health of adults with intellectual and developmental disabilities. Analyzing data from the 2002-2011 Medical Expenditure Panel Survey and the 2000-2010 National Health Interview Survey, we found that Black and Latino adults with intellectual and developmental disabilities have markedly worse health in contrast to their white peers with intellectual and developmental disabilities. Included in the document is an analysis of policy opportunities around health disparities, including obesity prevalence, among adults with intellectual disabilities.
Sandra Magana, Department of Disability and Human Development at the University of Illinois at Chicago (UIC-DDHD)
Susan Parish, Rehabilitation Research and Training Centers on Developmental Disabilities and Health at the Lurie Institute for Disability Policy, The Heller School for Social Policy and Management, Brandeis University (Lurie Institute)
Miguel Morales, UIC-DDHD
Henan Li, Lurie Institute
Glenn Fujiura, UIC-DDHD
The policy opportunity analysis was authored by
Ben Jackson, Association of University Centers on Disabilities (AUCD)
Adriane Griffen, AUCD
August 3, 2016
One out of every three adults aged 65 years or older in the general population falls at least once each year. For adults with intellectual disability (ID), the prevalence of falls is even higher with studies estimating a fall rate ranging from between 29% to 70%. Falls are a major cause of serious injury and hospitalization, and an important public health concern. Using baseline data from the Longitudinal Health and Intellectual Disability Study, we examined the prevalence of falls and potential risk factors for falls in adults with ID.
Kelly Hsieh, Department of Disability and Human Development, University of Illinois at Chicago
James H. Rimmer, Civitan International Research Center and Sparks Clinics, University of Alabama at Birmingham
Tamar Heller, Department of Disability and Human Development, University of Illinois at Chicago
Jessica Minor, Association of University Centers on Disabilities, Silver Spring, MD Christine Grosso, Association of University Centers on Disabilities, Silver Spring, MD
Rubin, I.L., Merrick, J., Greydanus, D.E., Patel, D.R. (Eds.) (2016), Health Care for People with Intellectual and Developmental Disabilities across the Lifespan
A new book has been published that offers a unique lifespan approach on health care for people with intellectual and developmental disabilities. It addresses the clinical as well as the systems of delivery of health care. It also provides a practical approach to dealing with the health and well-being of people with intellectual and developmental disabilities.
Chapters written by researchers of the Rehabilitation Research and Training Centre on Developmental Disabilities and Health include the following:
Kruti Acharya, Abigail Schindler and Tamar Heller:
Aging: Demographics, Trajectories and Health System Issues, pp 1423-1432.
Healthcare Financing, pp 177-183
David Erwin and Brian Hennen
Community Healthcare, pp. 229-241
James Rimmer and Kelly Hsieh
Health Promotion, pp1087-1103
Gibbons, H. M., Owen, R., & Heller, T. (2016). Perceptions of health and healthcare of people with intellectual and developmental disabilities enrolled in Medicaid Managed Care. Intellectual and Developmental Disabilities, 54(2), 94-105. DOI: 10.1352/1934-9556-54.2.94
This study examined perceptions of health and healthcare of people with intellectual and developmental disabilities (IDD) receiving Medicaid Managed Care. Exploratory, semistructured interviews were conducted with 23 participants. Findings indicate that participants generally expressed being in good health and defined good health as (a) absence of pain, disease, and symptoms; (b) adherence to or not requiring treatment; (c) physical self-care; (d) mental or spiritual self-care; and (e) ability to perform the activities one wants to do. Participants conceptualized healthcare as (a) ensuring needs are met through access to services, (b) obtaining quality services, (c) navigating the healthcare system successfully, and (d) receiving humanizing healthcare. This study has implications for improving healthcare and communications between people with IDD and healthcare providers.
Pan C-C, Davis R, Nichols D, Hwang SH, Hsieh K. Prevalence of overweight and obesity among students with intellectual disabilities in Taiwan: A secondary analysis. Research in Developmental Disabilities. 2016; 53–54, 305-313
Impact: Feature Issue on Supporting Wellness for Adults with Intellectual and Developmental Disabilities
Volume 29 · Number 1 • Winter 2016
This issue is co-edited by Kelly Hsieh and includes articles about the HealthMatters study and intervention that is led by Jasmina Sisirak and Beth Marks and an article Tia Nelis.
Online in PDF at https://ici.umn.edu/products/impact/291/291.pdf and http://rrtcadd.org/resources/Impact_29_1_-Winter_2016.pdf.
National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities
Setting a National Agenda for Health and Wellness Research, Practice, and Policy
In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.
View Health and Wellness Issue Brief, AAIDD Inclusion Journal Article, and Video