KU News: Federal surveys missing as many as 43% of individuals with disabilities, KU study finds

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Federal surveys missing as many as 43% of individuals with disabilities, KU study finds
LAWRENCE — To better understand the prevalence of disability in America and to address health disparities, the Affordable Care Act mandated that federal health surveys collect data to identify people with disabilities. But new research from the University of Kansas has found that the two most common sets of disability questions used in federal surveys are missing as many as 43% of individuals who should be counted, especially those with psychiatric disabilities or chronic health conditions. These gaps indicate that the amount of funds, services and health care resources allotted for certain types of disability are likely not consistent with need and that such surveys and counts should be improved, the researchers said.

‘Game-changing’ study offers a powerful computer-modeling approach to cell simulations
LAWRENCE — A milestone report from the University of Kansas appearing this week in the Proceedings of the National Academy of Sciences proposes a new technique for modeling molecular life with computers. The advance promises new insights into the fundamental biology of a cell, as well as faster and more precise treatment of human disease.

KU Endowment Board elects 6 new trustees
LAWRENCE — At the KU Endowment Board of Trustees’ annual meeting Sept. 30, six new trustees were elected: Gene Camarena of Wichita; Laura Koenigs of Springfield, Massachusetts; Erica LeBlanc of Chicago; Daniel Martin of Olathe; Lisa Murray of Mission Hills; and David Pittaway of Naples, Florida.

AAI announces the Center for Research Methods Consultation
LAWRENCE — The new Center for Research Methods Consultation will provide research methodological consultation and support services for faculty, staff and students at the University of Kansas. The center also aims to assist researchers in industries, nonprofits and other organizations needing support with writing methods sections for grant applications, carrying out statistical analyses and more.

Full stories below.

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Contact: Mike Krings, KU News Service, 785-864-8860, [email protected], @MikeKrings
Federal surveys missing as many as 43% of individuals with disabilities, KU study finds
LAWRENCE — To better understand the prevalence of disability in America and to address health disparities, the Affordable Care Act mandated that federal health surveys collect data to identify people with disabilities. But new research from the University of Kansas has found that the two most common sets of disability questions used in federal surveys are missing as many as 43% of individuals who should be counted, especially those with psychiatric disabilities or chronic health conditions.
KU researchers conduct the National Survey on Health and Disability, known as the NSHD, which collects a broad range of information on disability, health, employment and other factors. When they compared the results from that survey with responses to disability questions from the American Community Survey, or ACS-6, and the Washington Group Short Set, known as WG-SS — the two most common disability question sets — they discovered gaps in how many people are missed as having a disability through the question sets compared to those same people who self-reported a disability. These gaps indicate that the amount of funds, services and health care resources allotted for certain types of disability are likely not consistent with need and that such surveys and counts should be improved, the researchers said.
The study was written by Jean Hall, director of KU’s Institute for Health & Disability Policy Studies in the Life Span Institute; Noelle Kurth and Kelsey Goddard, research associates at the institute; and Catherine Ipsen and Andrew Myers of the University of Montana; and was published in the journal Health Affairs.
It was known prior to the study that some people with mental health disabilities and chronic conditions were overlooked by the ACS-6 and WG-SS. The extent was not clear, however. When the research team compared results from the 2020 NSHD, they found that the two measures failed to identify 20% and 43%, respectively, of respondents who reported a disability on other NSHD questions. The NSHD includes the ACS-6 and WG-SS questions but also asks individuals if they identify as having any physical or mental condition, impairment or disability that affects daily activities and/or requires the use of special equipment or devices, and also how they classify their own disability.
“The ACS-6 is widely used in this country by federal and state agencies. What we know about disability in America largely comes from these questions,” Hall said. “The WG-SS is used more internationally but is still widely used in the U.S. We were able to categorize how people self-identify and categorize their own disability and how those results compared with the other commonly used measures.”
The ACS-6 asks yes or no questions about difficulty with certain functions or activities, while the WG-SS asks people the level of difficulty they experience in certain daily life activities due to their conditions. Neither question set is comprehensive to include all functions or activities that someone may have difficulty with, and neither question set asks about specific conditions experienced.
The measures produce both full and partial false negatives. Some individuals may be partially counted as having a disability — but not one that reflects their self-reported condition. Others are missed by the measures, noted as a full false negative.
“We argue that you’re identifying people as disabled but not categorizing them correctly with the type of disabilities they report, and because of that, probably not getting people the supports and services they need,” Hall said.
Further complicating matters is the COVID-19 pandemic, which has resulted in a sharp increase in the number of people with mental health disabilities across the country. Individuals also have experienced complications from long COVID-19, which can both exacerbate existing disabilities or present new ones. The study found that the two standard measures miss people with these conditions in the greatest numbers, further leading to undercounting.
Because the American disability population is large and growing, it is essential to have accurate numbers to improve policy, address risk, understand disability prevalence and reduce adverse outcomes, the authors wrote. That can be addressed by including additional questions in federal surveys that ask:
1. Whether the person has a mental or physical condition, impairment or disability that affects daily activities and/or requires use of equipment or technology.
2. What the condition or conditions are and which is the primary condition.
3. Age of onset, duration or expected duration of the condition.
“People with disabilities are the best at defining their own conditions,” Kurth said. “There is a rising tide of disability pride in the U.S. in the last 10 years as well, so obtaining the most accurate counts of disability is something worth talking about.”
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Contact: Brendan Lynch, KU News Service, 785-864-8855, [email protected], @BrendanMLynch
‘Game-changing’ study offers a powerful computer-modeling approach to cell simulations

LAWRENCE — A milestone report from the University of Kansas appearing this week in the Proceedings of the National Academy of Sciences proposes a new technique for modeling molecular life with computers.
According to lead author Ilya Vakser, director of the Computational Biology Program and Center for Computational Biology and professor of molecular biosciences at KU, the investigation into computer modeling of life processes is a major step toward creating a working simulation of a living cell at atomic resolution. The advance promises new insights into the fundamental biology of a cell, as well as faster and more precise treatment of human disease.
“It is about tens or hundreds of thousands of times faster than the existing atomic resolution techniques,” Vakser said. “This provides unprecedented opportunities to characterize physiological mechanisms that now are far beyond the reach of computational modeling, to get insights into cellular mechanisms and to use this knowledge to improve our ability to treat diseases.”
Until now, a major hurdle to modeling cells via computer has been how to approach proteins and their interactions that lie at the heart of cellular processes. To date, established techniques for modeling protein interactions have depended on either “protein docking” or “molecular simulation.”
According to the investigators, both approaches have advantages and drawbacks. While protein docking algorithms are great for sampling spatial coordinates, they do not account for the “time coordinate,” or dynamics of protein interactions. By contrast, molecular simulations model dynamics well, but these simulations are too slow or low-resolution.
“Our proof-of-concept study bridges the two modeling methodologies, developing an approach that can reach unprecedented simulation timescales at all-atom resolution,” the authors wrote.
Vakser’s collaborators on the paper were Sergei Grudinin of the University of Grenoble Alpes in France; Eric Deeds of the University of California-Los Angeles; KU doctoral student Nathan Jenkins and Petras Kundrotas, assistant research professor with KU’s Computational Biology Program.
After conceptualizing how best to combine advantages of the two protein-modeling approaches, the team developed and coded an algorithm to drive the new simulation.
“The most difficult challenge was to develop the algorithm that adequately reflects the simple basic idea of the approach,” Vakser said.
But once they made that breakthrough, they could set about validating the new procedure.
“The paradigm was easy —a stroke of clarity,” Vakser said. “The existing simulation approaches spend most of the computing time traveling in low-probability — or high-energy — areas of the system. We all know where these areas are. Instead, the idea was to sample, or travel, only in the high-probability, low-energy areas, and to skip the low-probability ones by estimating the transition rates between the high-probability states. The paradigm is as old as the biomolecular modeling itself and has been widely used since the dawn of the modeling era decades ago.”
But Vakser said until his team’s new paper, the approach hadn’t been applied to the kinetics of protein interactions in cellular environment, the focus of their study.
“Because there are far fewer high-probability states than the low-probability ones, that gave us a huge gain in the speed of calculation — tens-to-hundreds of thousands of times,” Vakser said. “This was done without apparent loss of accuracy. One can argue accuracy was gained, because the simulation protocol is based on the ‘docking’ techniques, which are specifically designed for characterizing protein assemblies.”
The KU researcher said his cell-simulation method could be deployed to research human health and treat disease with a new level of precision.
“The approach can be used to study molecular pathways underlying disease mechanisms,” Vakser said. “It can be used to determine harmful effects of genetic mutations by the changed patterns of protein associations — genetic mutations cause changes in the structure of proteins, which in turn affect the proteins association. Or it could be used to identify targets for drug design by detecting critical elements in protein-association patterns.”
According to Vakser, the new simulation technique offers many promising research avenues to explore going forward.
“Among them are adapting the approach to protein interactions with nucleic acids, RNA and DNA,” he said. “Also, we’d like to account for the flexibility of molecular shapes, correlate with the rapidly developing spectrum of experimental studies of the cellular environment and apply the procedure to a model of an actual cell — with its actual molecular components packed together.”
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Contact: Michelle Keller, KU Endowment, 785-832-7336, [email protected]; @KUEndowment
KU Endowment Board elects 6 new trustees
LAWRENCE — At the KU Endowment Board of Trustees’ annual meeting Sept. 30, six new trustees were elected: Gene Camarena of Wichita; Laura Koenigs of Springfield, Massachusetts; Erica LeBlanc of Chicago; Daniel Martin of Olathe; Lisa Murray of Mission Hills; and David Pittaway of Naples, Florida.
Each brings a wealth of experience to their new role on the board.
Gene Camarena
Gene Camarena received his bachelor’s degree in accounting and business administration from the University of Kansas in 1979 and an MBA from Harvard University in 1987. He and his wife, Yolanda, live in Wichita. Camarena is president/CEO of La Raza Pizza Inc. His business interests include Pizza Hut restaurants, Marriott Hotels, banking and real estate development. Camarena has served three terms as the chairman of the board of directors of the International Pizza Hut Franchise Holders Association (IPHFHA) and was recently inducted into the IPHFHA Hall of Fame.
Camarena currently serves as chair of the board of directors for the Hispanic Scholarship Fund, which provides more than $30 million in scholarships to Hispanic college and graduate students annually. Camarena also serves on the Holy Savior Catholic Church Finance Committee and the board of directors for Big Brothers Big Sisters of Kansas, Empower, Quick Hire, Hispanics in Real Estate, United Way and the Pizza Hut Foundation.
Laura Pinkston Koenigs
Laura Pinkston Koenigs graduated from KU in 1978 with bachelor’s degrees in English and chemistry. She received her medical degree from KU in 1982. Koenigs and her husband, Ken (bachelor’s degree in chemistry in 1978, M.D. in 1982), completed residencies and fellowships at Yale University and live outside of Springfield, Massachusetts.
Koenigs recently retired from the Baystate Children’s Hospital, where she was the program director for the pediatric residency and an adolescent medicine physician and served as the chair of the American Board of Pediatrics Adolescent Medicine Subboard. She received the Rusty Leffel Concerned Student Award in 1978 in recognition of her “rabble-rousing” on the KU Athletic Corporation Board and work with the honor societies of Lambda Sigma and Mortar Board as they transitioned to become coeducational. She has been active on the Advisory Board for the Honors College and has served as a mentor for KU pre-med students. The couple are longstanding members of the Chancellors Club and Life Members of the Alumni Association.
Erica LeBlanc
Erica LeBlanc earned a bachelor’s degree in business administration from KU in 2002 and an MBA from the Ross School of Business at the University of Michigan in 2007. She and her husband, Todd, reside in the northern Chicago suburbs. LeBlanc is executive director, new ventures, at S.C. Johnson, where she has held marketing and general management roles of increasing responsibility across multiple divisions since 2007.
Prior to business school, LeBlanc was a consultant in Deloitte’s Human Capital practice, where she helped clients in a broad range of industries develop and execute change management and training plans. LeBlanc is passionate about mentoring and career coaching; she has been recognized as a best-in-class coach at S.C. Johnson’s Marketing Excellence Awards multiple years and is a frequent marketing guest lecturer and conference speaker. LeBlanc sits on both the Dean’s Advisory Board and Marketing Advisory Board at the KU School of Business, and she supports the Multicultural Business Scholars Program. In 2017, she was recognized as an Emerging Leader by the School of Business Dean’s Advisory Board, an award given in recognition of career achievements and community contributions.
Daniel Martin
Daniel Martin is a fourth-generation Kansan from Overland Park, with three degrees from KU including an MBA, juris doctor and doctorate in higher education policy and leadership as well as a doctorate in higher education management from the University of Pennsylvania. He received his bachelor’s degree from Southern Nazarene University.
Martin joined KU Endowment in August 2022 as president. He and his wife, Pam, moved to Kansas from Houston, where he served as the chief philanthropy officer at the Texas division of St. Luke’s Health. Prior to that, he served as president and CEO of Seattle Pacific University for nearly nine years. Martin is a certified fundraising executive who brings to KU Endowment extensive experience in higher education leadership and fundraising.
Lisa Murray
Lisa Murray earned a bachelor’s degree from Princeton University in 2004 and an MBA from Harvard Business School in 2009. She is a CFA holder. Murray and her husband, Thomas, live in Mission Hills. She is the chief investment officer for the Ewing Marion Kauffman Foundation, where she leads the team that oversees a globally diversified $2 billion portfolio. Previously, Murray was the managing director in investments.
Prior to joining the Kauffman Foundation, she was an investment consultant for Angeles Investment Advisors, where she worked with foundations and endowments, advising on all aspects of their investment programs. Murray is a member of the board of trustees of the Kansas City Art Institute and previously served on the board of directors of United Women’s Empowerment (formerly The Women’s Foundation).
David Pittaway
David Pittaway received a bachelor’s in American studies, history and political science from KU in 1972. He received a juris doctor in 1975 and an MBA in 1982, both from Harvard University. He and his wife, Jeannine, live in Naples, Florida. Pittaway is vice chairman, senior managing director and chief compliance officer of Castle Harlan and is also vice chair and chief compliance officer of Branford Castle. He is responsible for the firm’s current ownership investments in Gold Star Foods, Colyar Technology Solutions, American Achievement Corporation, Statia Terminals Group N.V., Morton’s Restaurant Group, United Malt Holdings Inc. and Bravo Brio Restaurant Group.
Pittaway served for 20 years in the U. S. Army Reserve and, upon retiring as a major, co-founded the Armed Forces Reserve Family Assistance Fund, which provides needed support for families of American service members serving overseas. Pittaway is a member of the Chancellors Club and the KU Alumni Association’s Veterans Network. He and his wife are supporters of KU Debate and the Department of History.

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Don’t miss new episodes of “When Experts Attack!,”
a KU News Service podcast hosted by Kansas Public Radio.

https://kansaspublicradio.org/when-experts-attack
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Contact: Chance Dibben, Achievement & Assessment Institute, [email protected]
AAI announces the Center for Research Methods Consultation

LAWRENCE — The Achievement & Assessment Institute (AAI) has announced the new Center for Research Methods Consultation (CRMC). The center’s mission is to provide research methodological consultation and support services for faculty, staff and students at the University of Kansas and beyond. The center will also assist researchers in industries, nonprofit community organizations, and other research and practice entities.
“I hope the center, through its services, can share knowledge about research methodology; advance rigorous, innovative research methods; promote ethical research, measurement and evaluation; and establish a diverse and inclusive research community,” said Haiying Long, director of CRMC and associate professor of educational psychology at the School of Education & Human Sciences.
Covering a variety of research activities, the center’s offerings include assistance with writing methods sections for grant applications, carrying out statistical analyses and writing results sections of manuscripts, research project evaluation, dissertation and thesis review, scale development, validation and more. The center will employ quantitative, qualitative, and mixed or multi-methods approaches in its work.
“Increasingly, external funding agencies require sophisticated forms of analysis, and both faculty and students often need support for their research. The new center will expand the reach of current support efforts and is consistent with the university’s Jayhawks Rising initiative, which prioritizes research and discovery,” said Rick Ginsberg, dean of the School of Education & Human Sciences.
The center arose from Long and colleagues’ work as faculty members in the Research, Evaluation, Measurement, and Statistics (REMS) program. There, Long and her cohort provided their services ad hoc. As more requests came in, Long said she realized it would be beneficial to “centralize efforts,” creating a one-stop center to connect her team’s efforts to individuals and organizations.
Although CRMC will initially focus on KU departments and programs, Long said her vision includes outside organizations at the local, national and even global level.
“I’ve seen communities in need of funding without the capacity to apply for it, communities fortunate to be awarded funding but lacking personnel to work on evaluation and reporting, communities needing researchers to guide them through projects or training to understand research. I believe the center can be a hub to provide these much-needed services to communities outside of KU,” Long said.
Valuing a diversity of thought and approaches, the center will embrace research methodology as a “holistic concept” and will focus on the meanings of data at a broader level, using a diversity, equity and inclusion lens to interpret data.
For Neal Kingston, AAI director and University Distinguished Professor of Educational Psychology, the Center for Research Methods Consultation leverages a wealth of skill and knowledge within the School of Education & Human Sciences and the Achievement & Assessment Institute.
“Having been thoroughly impressed by Haiying Long and her colleagues’ work, I am very excited about this new center,” Kingston said. “It organizes an existing base of expertise and adds research capacity and to groups that need it, aligning with the missions of both AAI and SOEHS.”

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