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KU researchers partner with state to better understand experiences of Kansans on disability services waitlist
LAWRENCE — Researchers with the University of Kansas Life Span Institute are working with the Kansas Department for Aging and Disability Services to collect and analyze data on a waiting list for Kansans to access the Home and Community Based Services program. Services such as personal attendants and other in-home supports, supported employment and in-home specialized medical care help Kansans live and work in their community.
Influential ‘Instavangelists’ blur line between religion and social media
LAWRENCE — A new article from a University of Kansas professor of religious studies examines the rise of online personalities, primarily women, who have replaced traditional faiths with their own gospel through Instagram and other online platforms. They preach to other women about “how to be their best selves,” even though both the media and the message further blur the lines between religion and the secular. The article appears in the Journal of Religion, Media and Digital Culture.
New core lab enhances infectious disease research at KU
LAWRENCE – A new core laboratory at the University of Kansas will enhance the speed, quantity and quality of research into infectious diseases, neurological disorders, cancer and immunology. The Flow Cytometry Core Lab opens its services to KU and regional researchers Sept. 1. The lab includes three new instruments allowing researchers to study individual cells within a liquid sample.
Full stories below.
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Contact: Christina Knott, Life Span Institute, [email protected], @kulifespan
KU researchers partner with state to better understand experiences of Kansans on disability services waitlist
LAWRENCE — Like many 24-year-olds, Katie Pine loves pop and country music, her job and reading novels such as “The Hunger Games.” The Olathe resident, who currently lives at home with her parents, would like to have her own apartment — roommate optional.
Kansas strives to support people such as Pine, who has an intellectual disability, to meet their career and life goals through the Home and Community Based Services (HCBS) program. However, Pine is one of more than 5,000 Kansans with a disability unable to access the services.
The HCBS program allows states to use Medicaid funds to offer a broad array of nonmedical services not otherwise covered by Medicaid. The provided services such as personal attendants and other in-home supports, supported employment and in-home specialized medical care help people live and work in their community.
Kansans such as Pine who are on the waiting list face an extensive wait for services estimated to stretch as long as 10 years. This means that when people with intellectual disability transition out of education services at age 21, they often have no formal paid supports for years after leaving school. Without continued support, those individuals may begin to lose skills they’ve gained.
The Kansas University Center on Developmental Disabilities (KUCDD) and the Institute for Health and Disability Policy Studies, both based at the KU Life Span Institute, and the KU Center for Research on Aging & Disability Options in the School of Social Welfare are partnering with the Kansas Department for Aging and Disability Services to collect and analyze data on the waiting list to determine how to address the needs of people on the state’s waiting list for services effectively and efficiently.
One of the benefits of the HCBS program is that support services in one’s home are usually less than half the cost of residential care, according to figures shared by the Centers for Disease Control & Prevention. “In other words, it is both more cost-effective and more desired by individuals for them to receive HCBS at home than to be placed into institutional care,” said Jean Hall, a researcher on the project and director of the Institute for Health and Disability Policy Studies.
In Kansas, HCBS waiver programs are funded by a 60/40 allocated federal/state match. Each state oversees the approval process for waivers and can limit enrollment based on available funds. When the number of funded spots in HCBS programs are full, individuals are added to waiting lists.
“The waiting list in Kansas is long enough that often times, Kansans with intellectual or developmental disabilities can only receive services when they experience a crisis such as the death of a parent or caregiver,” said Evan Dean, associate director of community services at KUCDD and a researcher overseeing the project.
Dean said the ultimate purpose of the study of the IDD waiting list in Kansas is to provide information on how to best serve those who remain on the waiting list and to find how to prevent future backlogs from happening.
“People’s support needs can change a lot over 10 years, and then they are entering services when they are most vulnerable after a crisis,” Dean said. “It’s a big challenge for organizations providing services to determine how best to support the person in those situations.”
Landing on the waiting list can interrupt the health, independence and development of an individual as they progress from education systems where there are many supports, on to adulthood, when they may be waiting for services, said Sean Swindler, a project manager involved in the research and a director community program development and evaluation at the Kansas Center for Autism Research and Training at KU.
The project is important because it addresses the right of everyone to be allowed to contribute and be a part of their community, Swindler said.
“People with disabilities have a rightful presence within our community,” he said. “They have the same rights as everybody else to live, work and play. And we have tools that can assist people with doing that with the IDD waiver program.”
Last fall, a Kansas legislative committee, the Special Committee on Intellectual and Developmental Disability Waiver Modernization, met to address HCBS waiver and consider alternatives. In the process, the committee heard testimony from officials from other states, researchers from KU, advocacy groups, parents and individuals with disabilities affected by the waiver delays.
Parents shared stories of being overwhelmed by the physical toll of being a caregiver 24 hours a day without support, as well as the cost of care, which can reach $50,000 a year. Some parents reported struggles with their own declining health as they, too, age while waiting for help to be approved.
Individuals on the waiting list also shared frustrations about wanting to live more independently. Among those providing testimony was Pine, who wrote a letter describing her desire to see changes to the waiver system that would help those like her to be successful.
“We need to change and update the system in Kansas to allow me to live where I want to live and not have to wait on a long list to get the services I need to have to be successful,” she said. “As an individual with a disability, I should get to choose where I want to live, where I want to work, who I want to be friends with — and right now this system is not designed with all that in mind.”
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Contact: Jon Niccum, KU News Service, 785-864-7633, [email protected]
Influential ‘Instavangelists’ blur line between religion and social media
LAWRENCE — Social media has radically changed the way we do things, from communicating to purchasing to learning to voting. But according to a new article, it’s also transformed the way we define religion — particularly among women.
“Religious studies scholars are interested in how fluid religion is and how it’s really bound up with social processes and power struggles,” said Jacquelene Brinton, associate professor of religious studies at the University of Kansas. “Whereas outside of religious studies, people think of religion as something static and easily defined. Social media is showing us how that process of transformation happens.”
Her new article “Media and the Formation of Secular/Religious Networks” examines the rise of so-called “Instavangelists.” These are women (primarily) who have replaced traditional faiths with their own gospel through Instagram and other online platforms. They preach to other women about “how to be their best selves,” even though both the media and the message further blur the lines between religion and the secular. It appears in the Journal of Religion, Media and Digital Culture.
Brinton first came across the term Instavangelist while reading Leigh Stein’s 2021 New York Times article titled “The Empty Religions of Instagram: How did influencers become our moral authorities?” It notes how media personalities such as Gabrielle Bernstein (1.3 million followers on Instagram), Glennon Doyle (2.1 million followers), Brené Brown (5 million followers) and Gwyneth Paltrow (8.3 million followers) have become the “neo-religious leaders of our era.”
“What’s fascinating to me is when authors like those at the New York Times write about Instavangelists, they don’t realize what they’re doing is putting forth a new definition of religion without any self-consciousness about it,” said Brinton, who also chairs KU’s Department of Religious Studies.
“It is a little bit weird that we’re discussing people who are not affiliated with what we generally define as religion in a typical way: a church, institution or belief. This has just entered our common understanding of what religion is,” she said.
While her piece focuses specifically on social media, Brinton said she believed this process was started by earlier media such as print and television.
“But what social media does is give us the sense we know the individuals we’re following … when it’s really just marketing. It enables that ‘hiddenness of the secular,’ and it enables that secular thing to appear to be religious. And that all comes together through this notion of self-help and reinventing yourself,” she said.
Media has often given viewers/users the illusion of having a deep connection to the source. For instance, “CBS Evening News” anchor Walter Cronkite was considered “the most trusted man in America,” even though few of his admirers had ever met him.
“Yet you didn’t see pictures of Walter Cronkite at home eating dinner with his family. Whereas Instagram gives you the sense that you are in people’s homes and involved in their lives — and you can actually get involved in their lives. You can comment on what they’re cooking and tell them how beautiful their children are,” she said.
Also, she said, that when people were watching network news, the commercials came on in the middle.
“You’re not exactly sure where they are now. What part is a commercial? Back then, you knew who was paying Walter Cronkite,” she said.
When researching Instavangelists, Brinton said she was most surprised by their ties to marketing.
“Evangelical female preachers such as Sarah Jakes Roberts are brands. They have agents and publicists. It was surprising to me how much they were able to mix in this branding message through social media when they are preaching about Christ.”
Was there a reason she exclusively focused on women?
“I think self-help messages tend to be geared toward women, and the messages of these Instavangelists are primarily geared toward women. But it would be interesting to try to find some male ones to see how their messages are formed,” she said.
Now in her 13th year at KU, the Philadelphia native specializes in Islamic studies but also maintains a strong research interest in media and theory. She is also a member of KU’s Center for Global & International Studies.
Brinton said she hoped her article will give those outside of academia generally and religious studies specifically a sense of the fluidity of religion, so that people writing about the topic from a digital media perspective can think of ways in which using religion as a static term is not entirely accurate.
“How did we get to this point where a person like Gwyneth Paltrow could be considered a religious personality by a newspaper? It doesn’t seem logical to me,” Brinton said. “I think this topic needs more excavating.”
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Contact: Vince Munoz, Office of Research, 785-864-2254, [email protected], @ResearchAtKU
New core lab enhances infectious disease research at KU
LAWRENCE – A new core laboratory at the University of Kansas will enhance the speed, quantity and quality of research into infectious diseases, neurological disorders, cancer and immunology.
The Flow Cytometry Core Lab opens its services to KU and regional researchers Sept. 1. The lab includes three new instruments, which allow researchers to study individual cells within a liquid sample.
“The core is providing flow cytometry analysis and sorting services. Flow cytometry and sorting is a way of distinguishing and analyzing cells based on their size and granularity,” said Peter McDonald, Flow Cytometry Core Lab manager.
Flow cytometry works by funneling a liquid containing microbes — usually either a blood sample or solution of bacteria — through a tube thin enough to allow only a single cell to pass through at a time. Fluorescent dye that attaches to certain microbes is added to the liquid beforehand. A laser is beamed through the tube as the dyed microbes pass through it, and sensors surrounding the tube monitor the ways the laser reflects off the dyed microbes. This tells researchers the size, shape and quantity of microbes in the sample.
“A lot of different research labs have flow cytometer analyzers that are cheaper. What this core provides is a more expansive, full-spectrum or spectral flow cytometer and two sorters,” McDonald said.
Two of the three new instruments in the core lab have fluorescently activated cell sorting (FACS) capabilities. This means they can separate the different microbes after they pass through the tube, allowing researchers to experiment on just one bacteria or cell type in a sample. The other instrument, Cytek Aurora, cannot sort microbes from the sample but has more light-sensitive sensors.
“The major difference with the Cytek is that it has an expanded spectral capacity,” said Scott Hefty, professor and chair of molecular biosciences. “It just has a broader array of capabilities for analyzing spectral properties.”
Beyond enabling innovative research, having flow cytometry services is essential to keeping KU competitive with peer academic institutions. Robin Orozco, assistant professor of molecular biosciences and the scientific adviser for the new lab, uses the technique in much of her research. Hefty said having these services helps recruit and retain new faculty like Orozco.
“She’s one of the junior investigators that, as we were attempting to recruit her, we saw this was an immediate need that we needed to address in order to enable her research, but there were so many others,” Hefty said. “We have two new faculty who have been here since January, and both of them are utilizing the flow facility as well.”
The core lab is currently expected to serve users from more than 20 labs, representing a half-dozen KU departments. Collaborative funding for the new instruments came from the College of Liberal Arts & Sciences, School of Pharmacy, Office of Research, Department of Molecular Biosciences, Chemical Biology of Infectious Disease and the University of Kansas Cancer Center. The Higuchi Biosciences Center also contributed to the acquisition prior to its restructuring.
The fee schedule has been announced for fiscal year 2023. Prospective users can contact McDonald for more information.
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