Friday, April 11, 2025

Have a news story, publication, event or staff highlight for us? Submit it by 5 p.m. April 21 here.

Dear LSI’ers,
 
As you all know, I’ve been at KU and with LSI for a long time, and I don’t think I am overstating the case to say that March was among the most tumultuous months I have experienced here. We were fairly overloaded keeping track of developments and so I didn’t have a message in our last newsletter, but I thought I’d take the opportunity to catch you all up on what we know, or as the case may be, what we don’t know.
 
I will start off by acknowledging the obvious…these are anxious and stressful times. I suspect that, like me, many of you may not be sleeping well and experiencing worry and strain on a daily basis. That said, I feel compelled to say that the LSI community has expressed remarkable grace, patience, and understanding the during this turbulent time.  
 
So, what do we know?  

So far, at LSI we have had one USDE subcontract cancelled, coming from a third party that was affected in the earliest contract cancellations by the Trump administration. One other additional large USDE grant was cancelled upon its renewal cycle, but then reinstated after a lawsuit was filed and an injunction was issued by the courts. While we have seen cautions from some program officers, we have had no other word on work stoppages or cancellations. The reduction in force at all federal agencies has clearly had an effect on the functionality of our sponsors. Websites have been down or slow to respond, and with the departure of many program officers, communication with those sponsors has been limited.

The CEO of the American Association for the Advancement of Science (AAAS), Sudip Parikh, visited KU in March. He indicated that there is an upcoming court decision on whether the president is required to spend money that Congress has allocated.   If that decision comes down on the side of spending, federal agencies will be in a position where they will have to spend a great deal of money in a very short time. That is why it is imperative that we keep working and keep submitting. 
 
What don’t we know?

The proposed dissolution of the USDE is unresolved. Nevertheless, we don’t know what will happen to USDE research funds if the department is dissolved. There is speculation that NCER funding may be shifted to NSF, and NCSER funding to HHS/NIH, but again, that is speculation.   We don’t know what will happen to extant grants. I suspect we will know more when the time comes for noncompetitive renewals.

The issue of NIH indirect costs also remains unresolved. Currently, the negotiated rate has been extended indefinitely by the courts, and so for the time being, the rate remains at 53%. However, that can be altered when negotiations for the budget occur in Congress this summer.  Again, speculation abounds about a lowered rate and a tiered system for private vs. public schools, but we don’t know anything for sure.

Recently, thousands of HHS personnel were laid off, including some directors of NIH Institutes.   Along with the folding of all study sections into the federal Center for Scientific Review, there is speculation that these may signal a reorganization or streamlining of NIH. Again, this is speculation.
 
I have been asked by many whether there is an organized KU outreach to congressional or regional politicians. If you have attended any of the town halls, you have undoubtedly heard helpful information from Kyle Christian, who is KU’s very effective federal liaison. Each one of us, of course, can contact our representatives as private citizens.  As noted in KU policy, “you are encouraged to contribute actively to our democracy, provided you do so on your personal time, using personal (non-KU) resources – including email – and in a way that makes clear you are not speaking on behalf of the university.”
 
I hope this is helpful and that it contributes to the strength and resolve of our LSI research community. One of the messages from the AAAS CEO was that, in these unprecedented times, there are forces working tirelessly in DC on our behalf, but also that we all still have agency and the capacity to affect change on the local level. I hope you all will take that to heart.
 
-- John
 
John Colombo, PhD
Professor of Psychology
Director, Schiefelbusch Institute for Life Span Studies

The Institute for Health and Disability Policy Studies (IHDPS) is conducting the National Survey on Health and Disability (NSHD) to ask U.S. adults with disabilities to share their experiences with housing, health care, health insurance, transportation, community participation and other aspects of daily life.

NSHD responses help shape resources, policies and practice recommendations aimed at improving the health, employment and overall well-being of people with disabilities in the United States.

“Obtaining robust data about the experiences of people with disabilities directly from those people is crucial when working to address disparities,” said Noelle Kurth, principal investigator for the project and a research associate at IHDPS, a part of the KU Life Span Institute.

The survey is available online or by phone (1-855-556-6328) and can be completed in English, Spanish or American Sign Language (ASL). People who need accommodations or have questions can contact the study team at 1-855-556-6328 or healthsurvey@ku.edu.

View the full news release.

The Kansas University Center on Disabilities will host the premiere of the new documentary “The Ride Ahead,” with the film’s co-directors and star this month in Lawrence.

New Hampshire-based, Emmy award-winning filmmakers Dan and Samuel Habib will introduce the documentary at 4 p.m. April 28 at Liberty Hall, 644 Massachusetts St.  Following the screening, they will be joined by KUCD staff and community partners for a post-film discussion with the audience. The event will include free popcorn and a raffle for prizes.

The screening and discussion are free and open to the public, but advance registration is required.

“KUCD is thrilled to have the opportunity to bring Dan and Samuel to Lawrence and to engage the community in viewing and discussing this powerful documentary,” said Karrie Shogren, KUCD director and Ross and Marianna Beach Distinguished Professor in the Department of Special Education. “Community engagement is essential to what we do, and this is an amazing opportunity.”

The film follows Samuel Habib, a typical 21-year-old itching to move out, start a career and find love. But, he said, no one tells you how to be an adult, let alone an adult with a disability.

View the full news release.

Congratulations again to Kathy Bigelow, who was recognized at the University Research Awards ceremony on April 9 and is pictured here with Matthias Salathe, chief research officer and senior vice chancellor, and Shelley Hooks, vice chancellor for research.

Many staff and researchers were away at the Gatlinburg conference; a video prepared for the event featuring Bigelow will be shared through LSI social media when it is available. 

Jean Hall, director of the Institute for Health and Disability Policy Studies at the KU Life Span Institute, is retiring this month after more than 30 years of work in the field of disability research and work in independent living for people with disabilities.

A surprise virtual retirement celebration on Tuesday, April 8, hosted more than 80 guests from around the country to recognize Hall for her research, advocacy for disability rights, mentoring and friendship across her career.

“That’s a lot of people out there!” Hall remarked as she tuned in to the Zoom call, not expecting the chorus of celebrants.

Barb Otto, who worked with Hall on Medicaid infrastructure change projects across the county in the early 2000s was among the first to share what Hall’s work has meant to her. “You really have a lot to be proud of,” she said. “You have contributed significantly to the work each of us on this call has been trying to do.” 

Halls’ research has included private, state, and federal projects related to health care and employment for people with disabilities or chronic illnesses in the employment, Medicaid, Medicare and high-risk pool systems. She has an extensive background in the evaluation of health care programs, especially for people with disabilities or chronic illnesses. In 2024, she was recognized for her many accomplishments by the NARRTC.

Rud Turnbull, disability advocate and retired distinguished professor of Special Education and Law at the University of Kansas, died last month at age 87.

Turnbull and his wife, Ann, played an important role in the history of the Life Span Institute by founding the Beach Center on Disability in 1988. The Beach Center, which merged with KUCD in 2024, provided international, national, state, regional, and local leadership and service in collaboration with people with disabilities, their families, community members, professionals, and policy leaders.

Turnbull spent his life working for the rights of his son, Jay, and all individuals with disabilities. His obituary noted that he spoke as an expert witness to Congress nearly a dozen times; wrote 350 peer-reviewed books, articles, chapters and technical reports in areas of public policy and disabilities; and he helped draft the Federal Assistive Technology Act, the Federal Family Support Act, North Carolina disability law and Kansas disability law, and the Individuals with Disabilities Act.

Services for Turnbull were held in North Carolina last month and an additional celebration is being planned for July 19th, with details to come.

Eric Kirkwood, a friend and strong advocate of Juniper Gardens, died in March from Sickle Cell Disease. His family was instrumental in founding Juniper Gardens in the heart of KCK and advocating for community-engaged research we do before there was even a term for it. Kirkwood continued those efforts by serving on the Juniper Gardens Advisory Board and working in local schools. That was in addition to his main focus, which was advocating for people living with Sickle Cell and serving as president of Sickle Cell Midwest for many years.

Jonathan Brumberg offered that recently published findings in Nature demonstrated a “big advance in our field” when they showed that a stroke survivor regained speech through technological advances including AI. Using sentences spoken silently in the survivor’s mind and a synthesizer based on her voice pre-injury, the research team created speech sounds, and trained an AI model to translate neural activity into sound. Brumberg, who was not involved in this particular study, said in an Associated Press article that decoding speech at a pace similar to live transcription had the potential to keep up with the fast pace of natural speech.  

Illinois Public Media included Valerie Mazzotti as a guest for "The 21st Show," for an episode focused on dismantling the Department of Education and the impact on students with disabilities. 

Jomella Watson-Thompson shared strategies for reducing youth violence at “Public Health After Dark,” featured in the Lawrence Journal-World’s coverage of the event. Watson-Thompson described ThrYve, the collaborative effort between the University Kansas Health System and 40 community organizations to prevent violence among youth in Kansas City, Kan.

The Lawrence City Commission presented Matt Mosconi, KCART director, with a proclamation marking April 1 as World Autism Day and signifying Autism Acceptance Month.

Karrie Shogren, KUCD Director and Ross and Marianna Beach Distinguished Professor in Special Education, received the International Research Award as part of the Premio Inclusione 3.0 initiative at the University of Macerata in Italy. The award recognized work to promote inclusion and the project with partners in Italy to translate and validate the Self-Determined Learning Model of Instruction and Self-Determination Inventory into Italian. (Source: KUCD social media.)

Today: The Cofrin Logan Center for Addiction Research and Treatment will offer its final talk in the center's spring lecture series at 12:30 p.m. Friday, April 11 in 1031 Dole and live-streamed. The event will feature a presentation by Timothy Trull, Curators’ Distinguished Professor and Byler Distinguished Professor of Psychological Sciences, University of Missouri.

Also today: Communicating Research to Varied Audiences, 11:30 a.m. – 1 p.m., Watson Library, 3rd floor, West Reading Room, hosted by the Institute for Policy and Social Research (IPSR). Jennifer Raff, associate professor, anthropology, will present about the importance of communicating research to different nonspecialist audiences. She will speak about the challenges and opportunities of maintaining a dual focus in her career on both research and science communication, and ways in which universities can support faculty who wish to do more public engagement.

Lunch and learn with Frontiers Clinical and Translational Science Institute: Frontiers staff will be at the Life Span Institute 11 a.m. Thursday, April 24 in Dole 1052 to provide a brief overview of their free services and how investigators can use them. The program will be at 11 a.m. and lunch will be offered at 11:30. The program will describe Frontiers options for recruitment, scientific editing, mock study sections, training programs, funding and more. To help with planning, RSVP for this event. Flyer available here (PDF). 

The Research Rising Initiative at the Life Span Institute will welcome Beth Johnson from Monash University, Victoria, Australia, for a talk at 3 p.m. Monday, May 5 in Dole 1031 and on Zoom (code: 1234). Johnson, senior lecturer, Psychology, and Turner Institute for Brain & Mental Health, will present "Understanding transdiagnostic needs in autism and ADHD." More information about Johnson and the talk is available through this Research Rising flyer (PDF).

The GAIN program has announced a 3-day, in-person clinical training on the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), 8:30 a.m. – 4:30 p.m. May 14 – 16, 2025 at the KU Clinical Research Center, 4350 Shawnee Mission Parkway in Fairway, Kan. The program will be led by Stephen Kanne, Ph.D., professor of clinical psychiatry at Cornell Medical College, and Kourtney Nigh, Ph.D., associate researcher at the Kansas Center for Autism Research and Training (K-CART). The ADOS-2 introductory/clinical training workshop will use a lecture format and demonstrations to introduce the basic principles of administering and scoring ADOS-2 Modules 1 through 4 and the Toddler module. Register here; more information is available through this flyer (PDF).

Join Lisa Hallberg for the next REDCap meeting 1 p.m. on the 3rd Thursday of the month (April 17th) on Zoom (passcode: 2025).

Public events

Join researchers and staff from the Fragile X lab and KCART for a trivia night fundraiser 6 – 8 p.m. Wednesday, April 16 at the Union Pacific Depot, 402 N. 2nd Ave. Entry to the event is a $25 donation to either the National Fragile X Foundation or Autism Society of the Heartland (gift receipt is the event ticket). Organizers suggest forming a team of four but anyone can participate.  The event will be emceed by KU Jayhawks broadcaster Brian Hanni, and includes prizes such as gift certificates to local businesses and a 3-night vacation stay in Sedona, Ariz. Event flyer available here.

As noted above in this edition, the KU Center on Disabilities is co-sponsoring “The Ride Ahead,” a film that will be shown at Liberty Hall 4 – 6:30 p.m., Monday, April 28. The film is co-directed by the subject and star, Samuel Habib, and his father, Dan Habib. More information available through KUCD.

Nondiscrimination statement required: Do you create, print or distribute flyers or postcards on behalf of a research project or events? KU policy has changed to reflect new requirements for the inclusion of nondiscrimination language on all flyers, postcards, and other media to be distributed. The language that must be included is: The University of Kansas does not discriminate in any employment practice, education program, or educational activity.

This language varies by type of material. Printed, bound, stapled material must use the long form of the statement. More information is here, under the entry “nondiscrimination.”

Hiring process changes: Chancellor Girod’s message on March 25 stated that a new position review process has gone into effect for all new and existing positions.  The University Cabinet will be reviewing requests.  For now, until the new process is finalized, KU staff are asked to use the current strategic hiring form. Required information includes complete funding information (including an OAC report of budget for the position), a justification for the new or existing position to be filled, who was the last incumbent to hold the position if existing and how long the position has been vacant. Contact the Talent Acquisition Team at employ@ku.edu with questions.

LSI staff with communications roles: KU is trying to clean up its list of people who have a role in KU communications across social media, web development, design, news, etc. They know that many people involved in communications wear multiple hats such as project management or administrative support and communications duties. If this defines you, or if you are 100% communications in your unit, please fill in this form to help KU connect you to resources, meetups and brand updates that may support your work.

Connections is produced by communications staff at the Life Span Institute for affiliated researchers, staff and students. 

Writing and editing by Jen Humphrey and Mindie Paget.
Image credits: Adobe Stock; Image of filmmaker Samuel Habib, LikeRightNow Films; Kathryn Bigelow image, Sandra Cintora; image from research provided via researchers at UCSF and UC Berkeley to the Associated Press; Strong Hall image from KU Marketing.

Please submit news, kudos, achievements and other items for consideration here.

The University of Kansas prohibits discrimination on the basis of race, color, ethnicity, religion, sex, national origin, age, ancestry, disability, status as a veteran, sexual orientation, marital status, parental status, gender identity, gender expression, and genetic information in the university's programs and activities. Retaliation is also prohibited by university policy. The following persons have been designated to handle inquiries regarding the nondiscrimination policies and are the Title IX coordinators for their respective campuses: Associate Vice Chancellor for the Office of Civil Rights and Title IX, civilrights@ku.edu, Room 1082, Dole Human Development Center, 1000 Sunnyside Avenue, Lawrence, KS 66045, 785-864-6414, 711 TTY (for the Lawrence, Edwards, Parsons, Yoder, and Topeka campuses); Director, Equal Opportunity Office, Mail Stop 7004, 4330 Shawnee Mission Parkway, Fairway, KS 66205, 913-588-8011, 711 TTY (for the Wichita, Salina, and Kansas City, Kansas medical center campuses).

The University of Kansas is a public institution governed by the Kansas Board of Regents.