Thank you for visiting the Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD). We aim to give you information on health status, health access, and health behaviors of adults with intellectual and developmental disabilities (IDD), strategies to improve health and function among people with IDD through health promotion activities, and how to improve health care access through integrated care practices. In addition we have information on developmental disabilities across the lifespan, disability friendly environments, and caregiver support.
Improving health through health promotion and health care access. Impacting lives for a healthier tomorrow.
Upcoming Presentations and Conferences
Presenter: Susan Parish, PhD, MSW
Susan Parish is the Nancy Lurie Marks Professor of Disability Policy, Director of the Lurie Institute for Disability Policy, and Associate Dean for Research at the Heller School, Brandeis University. Her research examines the health and financial well-being of children and adults with developmental disabilities.
The existing research on pregnancy outcomes for women with intellectual and developmental disabilities (IDD) is sparse. Susan Parish will present findings from a study that analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared deliveries among women with IDD to the general obstetric population. Women with IDD had longer hospital stays and were more likely to have Caesarean deliveries in contrast to other women. Rates of adverse pregnancy outcomes were elevated for women with IDD across a range of measures, including early labor, preterm birth, and preeclampsia, and their infants were more likely to have low birth weight, even after adjusting for age, race, ethnicity, and insurance type. Dr. Parish will discuss the implications of these findings, as well as the targeted interventions needed to address these deleterious outcomes.
pregnancy, childbirth, mothers, intellectual disabilities
Presenters: Tamar Heller, PhD and Randall Owen, PhD
Tamar Heller, PhD, Distinguished Professor, heads the Department of Disability and Human Development, University of Illinois at Chicago (UIC) and its University Center of Excellence in Developmental Disabilities. She also directs the Rehabilitation Research and Training Center (RRTC) on Developmental Disabilities and Health, and is Co-PI of the RRTC on Community Living Disability Policy and the Family Support RTC. Her research focuses on health and long-term services and supports for individuals with disabilities and their families. She was President of the Association of University Centers on Disabilities (AUCD) board, and co-founder of the Sibling Leadership Network. Her awards include the 2009 Arc of Illinois Autism Ally for Public Policy Award; the 2008 Lifetime Research Achievement Award, International Association for the Scientific Study of Intellectual Disabilities, Interest Group on Aging; the 2009 Community Support Services Community Partner Award, the 2010 College of Applied Health Sciences, UIC Outstanding Researcher Award, and the AUCD 2012 International Award.
Randall Owen, PhD is a Research Assistant Professor in the Department of Disability and Human Development (DHD) at UIC where he coordinates evaluations and research projects related to people with disabilities and the transition to managed care. Randall earned a PhD in Disability Studies from DHD and his research and teaching interests are and disability policy, particularly relating to employment, healthcare and human rights.
With the growth of managed health care across the country for people with disabilities on Medicaid it is important to assess the experiences and outcomes for people with intellectual and developmental disabilities (IDD). This webinar will present results from a four year evaluation of an integrated care program in which people transferred from fee–for-service Medicaid to managed health care. It will include innovative ways to assess the views of people with IDD regarding their health and healthcare, outcomes of the transition, and strategies resulting in better health care outcomes. Lessons learned will address the role of continuity of care, care coordination, consumer choice, and family involvement in meeting the health care needs of people with IDD and ways to improve these aspects.
Keywords: Medicaid managed care, intellectual and developmental disabilities, health care, health experiences
PLAY RECORDING (1 hr)
Presenter: Glenn Fujiura, PhD
Glenn Fujiura is a Professor of Human Development in the Department of Disability and Human Development, College of Applied Health Sciences. His research includes studies of the fiscal structure and demographics of the disability service system, on family policy, evaluation of long-term care services, poverty and disability, ethnic and racial issues in disability, and on the statistical surveillance of disability. Dr. Fujiura currently serves as the editor-in-chief of the journal, Intellectual and Developmental Disabilities.
A summary of a nationally representative analysis of US data on the health care expenditures of Americans with IDD will be presented. Costs were derived from 10 years of linked data using the Medical Expenditure Panel Survey (MEPS) and the National Health Interviewer Survey (NHIS). Data implications are discussed in terms of changes in the health care insurance markets, movement to managed care, and health service priorities for Americans with IDD
Disability statistics, health care, costs, health utilization
PLAY RECORDING (1 hr 3 min)
Presenter: Kelly Hsieh, PhD
Presenter bio: Kelly Hsieh, PhD, is a Research Associate Professor in the Department of Disability and Human Development at the University of Illinois at Chicago, and Associate Director of Evaluation and Statistics for the Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD). Dr. Hsieh received her PhD of Public Health with emphasis in Community Health and Epidemiology. Her research interests explore the relationship between health risk behaviors and health outcomes including obesity, falls, cardiovascular disease, and dementia across lifespan among individuals with intellectual and developmental disabilities (IDD) using epidemiological approach. She also has an interest in investigating efficacy of interventions to improve well-being and quality of life for adults with IDD through group exercise, health education, and person centered technology approach. She is currently the principal investigator of the Longitudinal Health and Intellectual and Developmental Disabilities Study (LHIDDS).
In this presentation, we will give an overview of the fall-related studies in adults with IDD. Findings of our Longitudinal Health and Intellectual and Developmental Disabilities Study (LHIDDS) on the prevalence of falls and the associated factors for falls in adults with intellectual and developmental disabilities will be presented. Comparisons between our findings and other studies will be examined. Implications and fall prevention strategies will be further discussed.
Keywords: Fall rates, intellectual and developmental disability, associated factors for falls, fall prevention
Presenter: Jim Rimmer, PhD, Carleton Rivers, MS, RDN, LD, and Justin D. Gentry
James H. Rimmer, Ph.D, is a Professor in the School of Health Professions and the first Lakeshore Foundation Endowed Chair in Health Promotion and Rehabilitation Sciences at the University of Alabama at Birmingham. For over 30 years he has been developing and directing health promotion programs for people with intellectual/developmental disabilities aimed at reducing obesity, increasing physical activity and improving nutrition in youths, adults and seniors with disabilities. Since 1997 he has provided leadership in the development of interdisciplinary research programs in disability, physical activity and health promotion at the University of Illinois at Chicago and now at the University of Alabama at Birmingham (UAB). Dr. Rimmer directs two federally funded centers, the National Center on Health, Physical Activity and Disability (funded by CDC since 1999), and the Rehabilitation Engineering Research Center on Interactive Exercise Technologies and Exercise Physiology for People with Disabilities (funded by the National Institute on Disability, Independent Living, and Rehabilitation Research since 2002). He is the incoming Chair of the Science Board of the President’s Council on Fitness, Nutrition and Sports.
Carleton Rivers, MS, RDN, LD, is the registered dietitian for the National Center on Health, Physical Activity and Disability (NCHPAD) as well as the UAB/Lakeshore Research Collaborative. Her work focuses on disseminating nutrition information to individuals with disabilities. Ms. Rivers is a project coordinator and telehealth coach for a number of studies within the UAB/Lakeshore Research Collaborative.
Justin D. Gentry is the Research Coordinator at The Resource Exchange in Colorado Springs, CO. He coordinates projects the focus on developmental disability, health status, and technology. Justin is also a health coach at a clinic for people with IDD and aims to earn his PhD in psychology and disability studies.
Abstract: POWERS (Personalized Online Weight and Exercise Response System) platform is a novel, multifocal-centered tailored intervention utilizing an innovative online tool designed to facilitate improvements in physical activity and nutritional behaviors. POWERSforID is a customized platform for obese individuals with intellectual disabilities (ID) and their caregivers. The POWERSforID intervention was designed to achieve weight loss and improve specific health markers while respecting and supporting the needs of the participants with ID as well as their caregivers.
Keywords: intellectual disability, obesity, telehealth, weight management program
Presenters: Jasmina Sisirak, PhD, MPH and Beth Marks, PhD, RN
Jasmina Sisirak, PhD, MPH is an Associate Director of Training and Dissemination at the RRTCDD and the Research Assistant Professor at the Department of Disability and Human Development, University of Illinois at Chicago (UIC). Jasmina received her PhD in Public Health with emphasis in Epidemiology and Community Health. Her research interests consist of nutrition, health literacy, health promotion and curriculum development for people with intellectual and developmental disabilities and their caregivers. Jasmina is also Associate Director of the HealthMatters Program.
Beth Marks, RN, PhD is a Research Associate Professor at the Department of Disability and Human Development, UIC and the Associate Director for Research in the RRTCDD. Her research interests include the empowerment and advancement of persons with disabilities through health promotion, health advocacy, and primary health care. She has published numerous articles and books related to health promotion, health advocacy, and primary health care for people with disabilities. Dr. Marks is also the Director of the HealthMatters Program.
HealthMatters, Scale Up is a unique health promotion research Initiative aimed at improving health and health promotion of people with intellectual and developmental disabilities (IDD) throughout the states of Alaska, Illinois, Kentucky and Missouri. During the webinar we will present key elements of a community academic partnerships with provider organizations, the University Centers for Excellence in Developmental Disabilities (UCEDD), and the University of Illinois at Chicago HealthMatters Program Team. The goal of the Initiative is to assist provider organizations to developing a comprehensive health promotion programming plan aimed at promoting healthy lifestyles of people with IDD and their paid caregivers. We will discuss the preliminary results related to the training, implementation, and process evaluation of the Initiative.
Keywords: health promotion program, physical activity, nutrition, training, staff, organizations
Presenter: Sandy Magaña, PhD, MSW (mailto:[email protected])
Sandy Magaña, PhD, MSW, is a professor in Disability and Human Development at the University of Illinois at Chicago. She has been a leader in investigating racial and ethnic disparities among children with autism and developmental disabilities and among their family caregivers. uilding on this research, Magaña has developed culturally relevant interventions to address these disparities, bringing the Promotora de Salud (community health worker) model to the disability world. Once such project is aimed at addressing health behaviors and needs of caregivers of children and adults with developmental disabilities. She is also director of the newly established Family Support Research and Training Center (FSRTC).
The majority of adults with IDD live at home with their families, and this is particularly true for adults with IDD from diverse backgrounds. Some research suggests that adults with IDD who live in the community face many health challenges compared to those in residential settings. In this webinar Dr. Magaña will present research on health outcomes of African American and Latino parental caregivers, and on racial and ethnic disparities on health outcomes among adults with IDD. She will discuss policy and community based interventions to address these disparities with a focus on how agencies serving IDD can address the health of families of persons with IDD.
Play recording (44 min)
Presenters: Corina R. Ronneberg, MS ([email protected]) and
Lisa Peters-Beumer, MPH ([email protected])
Corina R. Ronneberg, MS, is a Doctoral Candidate in Gerontology from the University of Massachusetts Boston. She is also serving as Visiting Senior Research Specialist in the Department of Disability and Human Development at the University of Illinois at Chicago and is the Managing Editor of the Journal of Aging & Social Policy. Corina’s research focuses on older adults, physical and mental health, faith, as well as health promotion for underserved populations.
Lisa Peters-Beumer is the assistant vice president, Adult and Senior Services for Easter Seals headquarters where she advances innovative efforts across Easter Seals national network of home and community based services providers, such as the development and implementation of core outcome measures, bridging adult day services with end of life care and scaling up an evidence informed models of care. In her current role, Lisa collaborates across disciplines with researchers, providers, and policy advisors. She has been working in the aging field for more than two decades in the areas of senior transportation, dementia care, long-term care, end of life care and home and community based services, with a significant focus on bridging aging and disability. She received her Master in Public Health from Northwestern University and joined Easter Seals headquarters in 2001. Lisa is the current board chair of the National Adult Day Services Association.
While end-of-life issues are increasingly gaining more attention, people with intellectual and developmental disabilities (IDD) continue to receive significantly less consideration in research, education, and clinical practice compared with the general population. This is a growing concern especially since the sheer number of persons aging with IDD is expected to double between 2000 and 2030. Furthermore, as policies continue shifting to reflect a preference for home and community-based services as an alternative to institutionalization, adult day services (ADS) have the potential of becoming ideal settings for receipt of end-of-life care, especially for individuals with IDD. However, end-of-life care and advance planning most commonly occur in long-term care settings, for the general population, and have historically been less of a priority in ADS and residential services for people with IDD. This presentation discusses findings from a study around the attitudes of, and collaboration between, ADS and end-of-life providers for aging adults including persons with IDD. We will also explore how ADS may be a great pathway for delivering end-of-life care to the IDD population and provide guiding recommendations.
Play recording (54 min)
- HealthMatters Program Scale-Up
- Impact of Managed Care
- Longitudinal Health and Intellectual and Developmental Disability Study
- National Health Outcomes Indicators
- Reducing Obesity through POWERS
Department of Disability and Human Development (DHD)
College of Applied Health Sciences (CAHS)
University of Illinois at Chicago (UIC)
1640 West Roosevelt Road, M/C 626
Chicago, Illinois 60608-6904
800-996-8845 (V); 800-526-0844 (Chicago Relay Access)
Funded by the United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grant # 90RT5020-03