Community Engagement for Disability and Aging Research (CEDAR)
Midwest
Issue 5: Fall 2019
CEDAR Midwest is a Disability and Rehabilitation Research project funded by the National Institute of Disability, Independent Living and Rehabilitation Research. This research project will explore the participation needs of people aging with a physical disability in the community and how community organizations can best meet those needs.
Current Projects
Cohort Study

The first year of our longitudinal cohort study to learn about the health and participation of people aging with disabilities is complete! We are pleased to announce that we reached our recruitment goal of 475 participants. We are now beginning to contact participants for their Year 2 follow-up survey, which will help us learn what aspects of their health and participation have changed in the year since the first survey was taken. If you participated in our survey, we will contact you approximately one year after you completed the first survey with our Year 2 follow-up.

Year 1 Cohort Study Demographic and Health Snapshot

We had 475 people participate in the first year of our cohort study. Preliminary analysis of participant demographics shows that the average age of participants is 57 years old, and participants have lived with their primary disabling health condition for an average of 19 years. The majority of participants (61.9%) said that they were single, divorced/separated or widowed, while 38.1% were married or in a long-term partnership. Most participants (60.2%) reported that they were on temporary or permanent disability.

A chart showing data regarding employment status: 18.4% working full-time or part-time, 21.1% seeking work/retired/other, 60.5% on temporary or permanent disability
Comorbid conditions are health problems that people aging with disabilities may have other than, or in addition to, their primary disabling condition. The number of comorbid conditions reported by each participant ranged from 0-13, with most participants reporting at least one comorbid condition.
A graph showing the number of comorbid conditions reported by participants. The number of conditions ranges from 0-13, with the highest categories being 3, 6, and 4
Depression is a problem that many older adults and people with disabilities face, and the respondents to our survey were no exception, with 69.3% of participants indicating some degree of depression.
A pie chart showing the number of participants categorized as having no depression/within normal limits (168, or 30.7%), mild depression (87, or 18.3%), moderate depression (168, or 35.4%), or severe depression (74, or 15.6%)
We are in the process of analyzing more data regarding the health and participation of survey respondents. We look forward to reporting more findings from the first year of our cohort study in the next CEDAR Midwest newsletter.
Our Team
CEDAR Midwest includes well-established scientists in rehabilitation/participation science and aging research, and community organizations that serve both older adults and people with disabilities. Our team is experienced in community-engaged research approaches. The institutional partners, Washington University, Paraquad and the Simmons School of Social Work, are leaders in participation and aging with disability. Scientific and community advisory boards enhance the team and ensure the scientific rigor and community focus of our projects. To learn more about our team, please visit cedarmidwest.org.
Team Member Spotlight:
Margaret Campbell

After retiring in May 2016 from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR), located within the Administration for Community Living, and the U.S. Department of Health and Human Services, Dr. Campbell formed a consulting firm to advise organizations and university-based researchers on issues related to the intersection of aging, disability and technology research and policy. To date, clients have included researchers at the Georgia Institute of Technology, Johns Hopkins University, University of Texas at Austin and Washington University School of Medicine in St. Louis.
 
During her 17-year career at NIDILRR (formerly known as NIDRR), Campbell has served as a Rehabilitation Program Specialist and as a Senior Scientist for Planning and Policy Support. In this position, Campbell’s primary responsibilities involved: providing scientific direction for strategic planning and priority development in the areas of aging with disability, prevention and management of secondary conditions, technologies to promote health and wellness, health disparities, and accessible health information technologies; serving as a project officer for NIDILRR grants in these areas; and coordinating NIDILRR’s research capacity-building efforts for both the Advanced Rehabilitation Research Training (ARRT) program, which funds institutions of high education to conduct multidisciplinary post-doctoral rehabilitation research, and the Switzer Research Fellowship Program, which awards Merit and Distinguished Fellowships to qualified individuals. In addition, Dr. Campbell represented NIDILRR to the following scientific and interagency committees: the National Academies of Sciences Forum on Aging, Disability and Independence; the Healthy People 2010 and 2020 Workgroup on Disability and Health; the Federal Interagency Workgroup for Healthy People 2010 and 2020; and the Health Information Technology Research and Development (HITRD) Subcommittee of the Networking and Information Technology Research and Development Program (NITRD). During the last four years of her federal career, Campbell also focused on promoting the use of translational research strategies to help fill the gap in the availability of evidence-based interventions for individuals with disabilities that have been demonstrated to be effective in community settings.
 
Prior to joining NIDRR/NIDILRR in 1999, Campbell served for nine years as the Research Director for the NIDRR-funded Rehabilitation Research and Training Center on Aging with Disability at Rancho Los Amigos National Rehabilitation Center, Downey, CA, and for four years as a research associate at the Andrus Gerontology Center, University of Southern California, directing a longitudinal study of intergenerational family relations.
 
During her career, Campbell has presented widely within the U.S federal government and at professional conferences and has published numerous peer-reviewed articles on aging with physical disability. She has also been active in several professional associations including serving as the chair of the Policy Committee for the Gerontological Society of America. Dr. Campbell’s undergraduate degree in Sociology is from the University of California at Davis, and her advanced degrees are in Human Development and Family Studies from Cornell University (1986) and Social Relations from Lehigh University (1978).

¡Hasta Luego, Sandra!
CEDAR Midwest would like to congratulate our postdoctoral fellow, Dr. Sandra Espin-Tello, on her new position with the University of the Basque Country in Spain. Sandra was an invaluable member of the CEDAR Midwest team, where she worked on the development of and data collection and analysis for our cohort survey, in addition to contributing to several publications. We wish Sandra the best in her new role with the Egokituz Laboratory, where she will conduct research related to assistive technology for children with cerebral palsy. Thank you for your work with our team, and best wishes, Sandra!
A group of people at an office going-away party
CEDAR Midwest researchers and members of Dr. Susy Stark's laboratory celebrate Sandra Espin-Tello's (second row, left) time with us and wish her the best of luck in her new adventure
Welcome to Our New Team Member!

We are pleased to welcome Washington University Rehabilitation and Participation Science PhD student Rachel Heeb to the CEDAR Midwest team. Rachel earned her OTD from Washington University in 2018. Her interest in the environment and its impact on disability and rehabilitation will be a valuable asset to CEDAR Midwest as we explore the participation of people with disabilities as they age.
 

Featured Advisory Board Member

Feedback from our scientific and community advisory boards help to refine the mission, projects and goals of CEDAR Midwest and ensure that our research is scientifically rigorous and responsive to the needs of the community. 
Chuck Graham, Great Plains ADA Center
Chuck Graham is the Co-Director/PI of the Great Plains ADA Center in Columbia, Mo., and serves as a CEDAR Midwest Community Advisory Board member. The Great Plains ADA Center is part of the National Institute on Disability, Independent Living and Rehabilitation Research's ADA National Network, which provides information, guidance and training on the Americans with Disabilities Act (ADA). The Great Plains ADA Center provides individuals with disabilities and their families, as well as architects, public officials, educators, businesses, and state and local governments, with information regarding ADA guidelines and regulations. 

Mr. Graham also serves as the Chair of the Columbia Disabilities Commission and Vice Chair of the Missouri Inclusive Housing Development Corporation. In addition to CEDAR Midwest, Graham serves on the Columbia Airport Advisory Board and was a founding member of Anthem's National Advisory Board on Improving Health Care Services for Seniors and People with Disabilities. Mr. Graham is an adjunct faculty member of the University of Missouri College on Human and Environmental Sciences and founded the Mizzou Wheelchair Basketball team. Additionally, Mr. Graham served eight years in the Missouri House of Representatives and four years in the Missouri Senate, where he was the Assistant Minority Floor Leader. Mr. Graham has been a leader in the disability and civil rights movement for more than 30 years.
What We've Been Up To...
n4a Conference 2019
Brittany Minor presented on our Community-Based Research Network at the National Association of Area Agencies on Aging's (n4a's) annual Conference in New Orleans on July 27. The n4a represents America’s national network of 622 Area Agencies on Aging. Attendees were interested to learn about the collaboration between Area Associations on Aging and Independent Living Centers to promote participation among individuals aging with disabilities.
Two women stand at a podium with the n4a logo on it
Brittany Minor and St. Louis Area Agency on Aging representative Anneleise Stoever at the National Area Agencies on Aging conference.

What's Coming

ACRM Conference
Kerri Morgan will present on falls and participation for people aging with disabilities at the 96th annual American Congress of Rehabilitation Medicine (ACRM) Conference 11/5-11/8 in Chicago, Illinois. The goal of the ACRM is "to improve lives through interdisciplinary rehabilitation research." The ACRM conference invites researchers in a variety of fields related to rehabilitation to share their research with an interdisciplinary audience.
For technical assistance with any part of this project including information, resources, and data, please call 314-289-4270 or email us at cedarmidwest@paraquad.org.
Find out more at cedarmidwest.org.
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For technical assistance or more information, please call 314-289-4270 or email us at cedarmidwest@paraquad.org.

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