Please join us for 2021 Healthy Brain Webinar Series for People with Intellectual and Developmental Disabilities!
View 2021 HBI Webinar Series on the HealthMatters Program YouTube Playlist
January 18th, 2022 (1pm-2pm CDT)
HBI Webinar 6: Preventing Violence, Abuse, Neglect, and Exploitation of People with Intellectual and Developmental Disabilities
The Arc’s National Center on Criminal Justice and Disability will share information about projects they are working on related to violence prevention, including hearing from survivors with intellectual and developmental disabilities (IDD) about the urgency of addressing this topic at the national, state and local level. Information about the range of abuse and neglect people with IDD experience will be discussed, including the aging population. National data on victimization will be shared. Talk About Sexual Violence will also be highlighted, a three-year project seeking to educate health care professionals about how to talk to patients with IDD about sexual violence using brief videos and supporting materials. The impact of trauma on people with IDD and the need for accessible and effective healing services will also be discussed.
Leigh Ann Davis, Director of Criminal Justice Initiatives, Director of The Arc’s National Center on Criminal Justice and Disability® (NCCJD®), The Arc of the United States
James Meadours, Civil Rights and Sexual Assault Prevention Activist
Mark Starford, Educator and Training Development Director, The Board Resource Center (BRC)
Kecia Weller, Abuse Prevention Advocate, The National Center on Criminal Justice and Disabilities, The Arc of the United States.
- List The Arc’s National Center on Criminal Justice and Disability projects.
- Identify the range of abuse and neglect people with intellectual and developmental disabilities experience.
- Describe how to talk to people with IDD about trauma.
February 8th, 2022 (1pm-2pm CDT)
HBI Webinar 7: Applying findings from a longitudinal study of dementia care group homes to the development of community dementia support services for adults with intellectual disability
Community housing for adults with intellectual disability (ID) and dementia (AD) is becoming more prevalent. The Wichita Project, a longitudinal study of several group homes (GHs) for adults with ID and dementia examined several resident and administrative factors – which would have implications for the development and maintenance of community dementia care services. Two groups of adults with ID, 15 with dementia and 15 matched controls (COs), were followed over 10 years. At the start of the study, the with-dementia residents lived in 5-bed-each dementia group homes and the control participants resided in general group homes or apartments. Over time, about 2/3s of the adults with dementia died and two matched controls also died. Useful information gleaned included health and function factors differentiating adults with dementia from adults without dementia. Deaths occurred at age-norms, but comparative co-morbidities showed adults with dementia had significantly more classic cognitive and physical health issues associated with dementia and physical debilitation. Providing small home care for adults with dementia also led to a need for variations in staffing patterns and periods of intensity of care depending on severity of dementia. These findings can help with planning long-term use of such group homes and other community supports so that adults with ID can receive dementia capable care in a community-based specialized setting. Covered will be what agencies and families might to identify care needs and design dementia-capable services.
Matthew P. Janicki, PhD, is a Research Associate Professor in the Department of Disability and Human Development at the University of Illinois at Chicago, as well as the co-President of the US National Task Group on Intellectual Disabilities and Dementia Practices. He is also a member of the federal NAPA Advisory Council on Alzheimer’s Research, Care, and Services. Previously, he served as director for technical assistance for the former Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University, was director for aging and special populations for the New York State Office for People with Developmental Disabilities, and spent a year as a Joseph P. Kennedy, Jr. Foundation’s Public Policy Leadership Fellow at the National Institute on Aging and the United States Senate. Currently, he is leading a longitudinal study of specialized group homes designed for dementia-related care of adults with intellectual disability, including Down syndrome. He was the principal investigator of several NIDRR-funded studies that examined how community agencies provide community supports to adults with intellectual disabilities affected by Alzheimer’s disease and how families are aided by community agencies in supporting adults with Down syndrome affected by Alzheimer’s disease, and was also the project director of a NIH-funded effort that provided the World Health Organization with a series of background reports on promoting longevity among adults with intellectual disabilities throughout the world. He served as an officer of the International Association for the Scientific Study of Intellectual and Developmental Disabilities from 2000-2008 and was the founding editor of the Journal of Policy and Practice in Intellectual Disabilities. He is also the editor of numerous books and author of articles on aging, dementia, public policy, and rehabilitation concerning adults with intellectual and developmental disabilities (including Dementia, Aging, and Intellectual Disabilities: A Handbook).
Kathy Service, RN, MS, FNP-BC, CDDN has worked in the field of intellectual and developmental disabilities (IDD) since 1976 both in institutional and community settings with the Massachusetts Department of Developmental Services (DDS) until retirement in 2016, yet continues to consult on dementia matters for DDS. Over those years, in addition to hands-on clinical support, she has worked together with and presented to people with IDD and their families and direct support professionals. In 1995, she was the co-developer and coordinator of a series of presentations on dementia and people with IDD in Western Massachusetts. Kathy has served on advisory boards nationally and internationally, presented at domestic and foreign conferences, and written articles, book chapters and educational modules on topics of aging, dementia, loss and grief and nursing support of people with IDD. She had served on the initial Steering Committee and is currently on the Board of Directors of the National Task Group on Dementia and Intellectual Disabilities (NTG) and as a Master Trainer contributed to the NTG’s Dementia Capable Curriculum. She is a Family Support Volunteer through the Alzheimer’s Association and locally conducts Dementia Friends sessions.
- Participants will understand the characteristics of dementia in adults with intellectual disability.
- Participants will be able to discuss health and function factors resulting from dementia and apply them to program adaptations for adults with intellectual disability.
- Participants will be able to plan general service adaptations that enable adults with dementia and intellectual disability to remain in community settings.
1. Webinars are free.
2. CEUs are not offered for the webinars.
3. Webinars and materials will be recorded and archived on YouTube.
4. For disability accommodations email Jasmina Sisirak (firstname.lastname@example.org).
5.Webinars will be held on Webex platform. You can test your connection with Webex before joining the meeting HERE.
Healthy Brain Webinar Series is presented by the HealthMatters Program (https://healthmattersprogram.org), Department of Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago in partnership with National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and is Centers for Disease Control and Prevention (CDC), National Center for Chronic Disease Prevention and Health Promotion, The Healthy Brain Initiative Award #1 NU58DP006782-01-00 supported the development of this website. Contents are solely the responsibility of the authors and do not represent the official views of CDC.
Healthy Brain Initiative for People with IDD
May 4, 2021
Beth Marks, PhD, RN, FAAN, HealthMatters Program, University of Illinois at Chicago (UIC)
Valerie Gruss, PhD, APN, CNP-BC, FAAN, Clinical Professor, Director ENGAGE-IL Geriatrics Workforce Enhancement Program (GWEP), UIC
Matthew P. Janicki, PhD, UIC, US National Task Group on Intellectual Disabilities and Dementia Practices
Kathy Service, RN, MS, FNP-BC, CDDN, US National Task Group on Intellectual Disabilities and Dementia Practices
Jasmina Sisirak PhD, MPH, HealthMatters Program, UIC
Watch Webinar on YouTube
Brain Health Across the Lifespan for People with Intellectual and Developmental Disabilities
May 25, 2021
Lucille Esralew, PhD, NADD-CC, Office of Statewide Clinical Services, Clinical Services Branch for the California Department of Developmental Services
Watch Webinar on YouTube
Nutrition and Brain Health for People with Intellectual and Developmental Disabilities
June 29, 2021
Dawna Torres Mughal, PhD, RDN, LDN, FADA, FAND, Morosky College of Health Professions and Sciences at Gannon University
Watch Webinar on YouTube
Tailoring, Targeting, and Addressing What Matters: Supporting People with Intellectual and Developmental Disabilities Who are Living with Dementia PowerPoint Presentation Laura N. Gitlin, Ph.D., FGSA, FAAN, an applied research sociologist, is Distinguished Professor and the Dean of the College of Nursing and Health Professions at Drexel University, Executive director of the AgeWell Collaboratory, and the Age Friendly initiative at Drexel. Watch Webinar on YouTube
Enhancement of Geriatric Care for All Resources for Older Adults with Intellectual and Developmental Disabilities Who are Living with Dementia October 26th, 2021
Valerie Gruss, PhD, APRN, CNP-BC, FAAN is a Clinical Associate Professor at the University of Illinois at Chicago and is a Geriatric Researcher, Clinician and Educator. She is Director, ENGAGE-IL and Director of Interprofessional Education for the College of Nursing, Department of Biobehavioral Nursing Science.
Watch Webinar on YouTube