graphic medicine with various images behind the title

HDI receives WITH Foundation Grant to support work in Graphic Medicine

Thanks to a grant from the WITH Foundation, HDI will have the opportunity to create new resources in the emerging field of graphic medicine.  

“Graphic medicine is a field which explores the intersection between comics and illustration or graphic formats with the field of healthcare, health, and medicine,” said Erin Fitzgerald, who brings her expertise with graphic medicine to the project. 
Fitzgerald explained that graphic medicine frequently uses sequential art forms like comics to explore medical topics. Comics, Fitzgerald noted, are one of the more common formats used in the field, but there are other forms of visual media that it uses. It can allow for more voices in medical fields, reduces the distance between patient and doctor, and follows the principles of universal design by offering easily understood explanations of medical information.  

And thanks to the help of the WITH Foundation, HDI hopes to expand its library of graphic medicine resources.  

“We want to curate existing graphic medicine materials that might be relevant for people, and then create new graphic medicine materials using teams of people,” said Project Director Laura Butler. “Each material will have a team that has a person with a disability who’s identifying an issue in healthcare that they want to discuss or improve, and they will work with one of our project team members as well as a creative to bring that graphic medicine piece to life.” 

In addition, the grant will allow HDI to deepen its relationship with UK HealthCare. The two organizations are already working together on a transition-to-work program for high school students with intellectual and developmental disabilities called Project SEARCH. This new grant will allow the two more chances to use stories of lived experience to address barriers to healthcare access, as well as to increase understanding of healthcare processes and experiences for both patients and practitioners. 

This won’t be the first time that HDI and the WITH Foundation have partnered. This is the third time HDI has worked with the foundation, and in the past, the collaboration produced a short comic that explained the process of drawing blood. Though Butler said she didn’t recognize it as graphic medicine at the time, now she’d think of it as a high quality example of the form. This project aims to create more resources of a similar nature.  

“This project will improve access to healthcare for people with developmental disabilities (DD) through the use of graphic medicine. People with DD will work collaboratively with creatives (visual and graphic artists) and healthcare clinicians to create materials that communicate both the patient and the provider side the healthcare experience,” the grant proposal said. “People with DD will develop the concept for each set of materials by drawing on their lived experiences and creatives and clinicians will bring the concepts to fruition by using their own areas of expertise. Members of the collaborative teams will be identified on an as-needed basis in order to foster a fluid and creative space for innovation.” 

Butler and Fitzgerald aren’t sure what specific materials will be created with this project. Before they see what that could be, they have to unite the teams that will create the new resources. But both are excited to see how this could help people eliminate barriers to quality healthcare for people with disabilities.  

“So many people have stories about things that have gone wrong with healthcare,” Butler said. “Anything we can do to make that process easier is good…Hopefully these types of things will make it less intimidating, and less overwhelming for people.” 

Fitzgerald agreed, noting that stories of the challenges people with disabilities face when finding quality healthcare often go untold. This project, however, would put the power in their hands to help solve those problems.  

“It is so rare when people with lived experience with disability are asked to participate in something as an equal partner and as a consultant,” she said. “The way a lot of our systems in society are structured is that we look at the majority – and anything outside of that, we kind of get to it when we get to it. So this kind of collaboration is really important to me, where we start with perspective and experience that is usually considered as an afterthought.” 

person working on a computer at a desk

Fund for Excellence Projects Awarded

The University of Kentucky Human Development Institute Fund for Excellence was created to support the development of innovative programs, services, or products to address the needs of individuals with disabilities and their families, for which funding is not currently available. Below is a list of the most recent awards.

Expanding the Social Networks of Adults with Autism

Project Lead: Patti Logsdon

This project supports autistic adults in expanding their friendships, social networks, and community participation in valued community roles and activities. This will be achieved through a blended approach that builds upon person-centered planning, circle of friends/support, peer networks and valued social roles. This project will support HDI’s mission of building inclusive communities by developing social networks.

Mind in the Making: Seven Essential Executive Skills for Families

Project Leads: Dr. Joanne Rojas and Sally Dannenberg 

Mind in the Making (MITM) is a research framework that summarizes decades of developmental research into the seven essential life skills. The MITM training consists of eight modules geared to early childhood professionals and family educators to engage them in an experiential and reflective process of self-discovery of their own competence in these life skills, connect their experience to the research, and learn to promote these capacities in themselves as well as in the children in their care. The goal of this project is to provide this training to communities throughout the state that serve families that are at risk because of a variety of circumstances. This project supports HDI’s mission of addressing the inequity of access to resources and support networks. 

Working Alternatives to Guardianship (WAG)

Project Lead: Laura Butler 

The goal of this project is to form a workgroup of stakeholders that will work together to inform workable decisional support options for people who have not traditionally had viable options beyond legal guardianship. The initial objective of the group will be to create a Continuing Legal Education course that will focus on providing people with legal documents that will be accepted by a wide variety of other professionals. This project will further HDI’s mission of building inclusive communities by helping identify ways for more people to experience full personal and civil rights. 

Person using an adaptive bike in the woods

UK HDI Fund for Excellence Award to fund Bluegrass Mountain Biking Accessibility Initiative 

Kentuckians will soon have access to an adaptive mountain biking trail, thanks in part to an internal grant funded by the UK Human Development Institute. The trail, to be built by the Kentucky Mountain Biking Association, will be designed with the interest of people with disabilities at the forefront, prioritizing input and feedback from trail users with disabilities. 

The $10,000 grant, known as the Fund for Excellence award, was awarded to John C. Hill and Laura Butler. The Fund for Excellence Award is issued to Human Development Institute staff members for innovative projects, services and products that address the needs of individuals with disabilities and their families.  

Hill, principal investigator of the grant, is a survey project coordinator at HDI, an adjunct professor in the College of Education and the College of Information and Communication, and, fittingly, a mountain biker himself. 

“When I look through things, I try to find ways to connect my personal life to my research,” Hill said. 

The grant proposal written by Hill and Butler for their project, called the Bluegrass Mountain Biking Accessibility Initiative, addresses indicated barriers to physical activity and equitable access to outdoor recreation. Butler, disability program administrator at HDI and project director of the mountain biking initiative, works closely alongside Hill to collect and analyze Kentucky National Core Indicators survey results to assess the services and supports offered to people with disabilities.  

The location of the new trail, which will be in central Kentucky, is still being determined. It may be its own trail or a new branch or modifications to an already existing trail. However the logistics pan out, the scope of the project that is funded through the Fund for Excellence Award will conclude in the second half of 2023. In the meantime, Hill, Butler, and their partners on the project are working to install QR codes on trails throughout the bluegrass, in order to conduct surveys to better understand what limitations current trail users have and what sorts of trail features and/or adaptive technology would best support their needs. 

In Hill’s experiences, he has seen that the culture within the bluegrass mountain biking community is to support new bikers and cheer them on, even when that means slowing down the pace a bit.  

“The mountain bike community is really special to me because [there are so many] extremely intelligent, nice people, and they care about others. They just want to get people involved,” Hill said. 

Hill and Butler are relying on the expertise of the Kentucky Mountain Biking Association to physically build the trail. Together, and in collaboration with Midway University and the UK Community Innovation Lab, the team plans to consult with experts in trail building, universal design, and the community members who the trail is designed for throughout each step of the process. 

For questions about the Bluegrass Mountain Biking Accessibility Initiative, please contact John C. Hill at johnchill@uky.edu.  

three dental mirrors

My Choice Kentucky: Making Decisions in Dental Care

The UK Human Development Institute (HDI) and the UK College of Dentistry have received a grant from the WITH Foundation, the American Academy of Developmental Medicine and Dentistry, and Ability Central to create materials to enhance the dental care of people with intellectual and  developmental disabilities who use augmentative and alternative communication (AAC). These materials will include videos and symbol sets that will improve communication and understanding for AAC users, their supporters, and dental professionals. Additionally, the materials will facilitate the use of supported decision making in dental care.

Applicants were encouraged to develop new partnerships or significantly enhance existing partnerships between disability organizations, advocates, community organizations, and healthcare providers. Laura Butler and Jacqui Kearns will represent HDI in this project that forges a new partnership between the HDI and the UK College of Dentistry.

Dr. Kathy Sheppard-Jones, Executive Director of HDI says, “This is a powerful collaboration with the potential to positively impact dental health for AAC users. The partnership shows how we can not only build capacity for success, but also bridge capacity across areas of expertise that ultimately builds stronger communities.

Follow news and HDI events on our website, hdi.uky.edu and our social media accounts.
Facebook:  @ukhdi
Instagram:  @uk_hdi
Twitter:  @hdi_uky
 
Project Contact: Laura Butler
Laura.Butler@uky.edu
 
Photo by Cristina Romano
 

Man with Down syndrome working at a computer.

Fall Seminar: Supported Decision-Making and Guardianship

“Guardianship has been the default option for people who “need protection” for centuries.  It’s time to rethink that option. There are people who have a legitimate need for a guardian; however, many other people could be better served by simply  getting some support to make decisions. Supported decision-making is being utilized across the globe both as an alternative to guardianship and as a way to increase self-determination for all people with disabilities and older adults.” – Laura Butler

Join us in person or online for our Fall Seminar series on Friday, September 28, 2018 from 1 – 3pm ET to learn more about “Supported Decision-Making and Guardianship.”
Learn more from experts Laura Butler, Camille Collins, and Bill Dolan. The seminar will be held at the UK Coldstream Research Campus Human Development Institute Training Room 1525 Bull Lea Road, Lexington KY. A link to the live video stream of the seminar will be sent to registrants.

Click here to register for the seminar. For help registering, contact walt.bower@uky.edu. Continue reading