Woman with brown hair smiling at the camera

Medical outreach in action!

Stephanie Meredith is going to be busy soon. 

Meredith, HDI’s Medical Outreach Director, has been invited to be a part of several medical conferences in the US and Canada starting this month and continuing until April. 

In February, she travelled to and presented at the Down Syndrome Affiliates in Action Conference in Dallas, Texas, and she hopes to follow that with presentations at USC Columbia genetic counseling student cohort, the American College of Medical Genetics and Genomics in Toronto, the sixth congress on the ethical, legal, and social implications of genomic research in New York City and the International Society for Prenatal Diagnosis in Boston.

She will also be representing HDI at the American Academy of Developmental Medicine and Dentistry’s One Voice Conference in Chicago, and the Disability Policy Seminar in Washington D.C. 

With so many conferences in so many places, Meredith has a lot of opportunities ahead of her, and she’s excited to take advantage. 

Meredith is experienced in delivering the types of talks she’ll be giving in these conferences and has a different approach for each audience. 

“When I talk to the advocacy organizations, I’m teaching or training them on how to be methodical and diplomatic,” she said. “Are you actually capturing those families with Down syndrome in your area who have babies being born? How do we figure out whether you are or not? And where are your gaps? And I’m going to be talking about how to support families who have Black and Hispanic children with Down syndrome. We recently completed a research study that found that there was some implicit and explicit bias in those conversations.”

Stephanie will also be working on how to help medical professionals build up their best practices. 

“I talk about some of the ways in which bias can be present in conversations and what they can do to make those diagnosis conversations more supportive to families and also more equitable in how they talk about disabilities,” she said. “They’ll say, ‘Oh, I’m so sorry, your baby has this condition,’…we don’t need to frame it as bad news. It is likely unexpected news, but it’s not inherently bad news.”

She’s particularly excited to present to the American College of Medical Genetics and Genomics, where she will share the stage with some experts on disability and ethics, many of whom have disabilities themselves. 

“I’m even more excited that my colleagues are sharing their perspectives too,” she said. “I think that it’s really important, especially for geneticists and with the history of some of the discrimination against people with disabilities in genomics.”

Not only does Meredith have the opportunity to share her knowledge and help lift up others with lived experience, she also has the chance to experience a lot of different places in the process. It’s a great chance to travel and learn about new places and people. While she’s excited to see new places and try some new foods, she is also knows that traveling gives her the chance to learn more about the people she needs to work with. 

“When you’re doing community engaged work, it helps to have those personal relationships with people,” she said. “Sitting down and breaking bread with people and being in the place where they live helps you to have closer connections and a greater appreciation for what they’re dealing with.”

photo of Rachel Womack wearing black glasses and a black shirt

Dr. Rachel Womack joins HDI!

HDI’s new training director worked with the organization before, and it had a profound impact on her life. Now, she’ll be working with some of the programs that made that change. 

Dr. Rachel Womack is HDI’s new training director, and that means she’ll be leading up many of HDI’s educational programs. 

“This includes directing the Kentucky Leadership Education in Neurodevelopmental Disabilities (LEND) program, which is an interdisciplinary leadership training program designed to prepare students to provide support to individuals with developmental disabilities and their families,” Womack said. “I also provide oversight for our Undergraduate Certificate in Universal Design and Graduate Certificate in Developmental Disabilities as well as support for our interns and research assistants. Finally, I help administer our Seminar Series and engage in collaborative research activities across the institute.”

Womack first got involved with HDI as a trainee during her master’s program. 

“I had the most wonderful experience, which has shaped not only my career, but my life in so many ways. That program led to a variety of professional and personal disability-centered experiences, influenced my research agenda, and ultimately motivated me to apply for this position at HDI,” she said.

After that, she started working in child welfare and direct disability services and cultivated a diverse résumé within those fields. She’s helped children aging out of the foster care system, managed family reunification programs, worked in supported employment and taught as an adjunct professor at UK’s college of social work. 

Now, her new role at HDI allows her to combine multiple passions. 

“I recall attending the AUCD Annual Program Meeting as a graduate trainee and sharing with the then Training Director that my goal upon finishing my doctoral degree would be to obtain a position like hers,” she said. “Here I am, years later, in that exact role. I can’t think of a better way to combine my passion for working with students and serving the disability community. I look forward to continuing to grow our training and certificate programs and to forming new collaborative partnerships with other professionals and educators from across the university and beyond.”

And while her passion for disability advocacy has played a huge role in defining her career, it has also intersected with her personal life and many of her own interests. In particular, Womack considers herself an animal lover.

“My wife and I own two horses who are also used part-time as equine assisted therapy horses through local nonprofit Annie’s Answer. We are caregivers for a young adult with a developmental disability, and I enjoy sharing my love of horses with her as well. We also own several dogs and have fostered dozens over the years through local rescues,” she said. “Beyond that, I am a lover of local music, house plants and gardening, and generally spending time outdoors whenever I can.”

Overall, Womack has found that her first impressions of HDI have only been reinforced as she’s become a part of the team. 

“I want to play a part in affecting change like that for our students and for the disability community in general. I plan to devote my career to allyship, advocacy, and change-making for folks for disabilities and the people who care about them, and HDI is the perfect place to do that,” she said. “This is an incredible community of brilliant, dedicated researchers, educators, and professionals who have all come together for a common cause. It is a beautiful thing.” 

4 people seated at a conference room table having a discussion

HDI receives gift from the Saul Schottenstein Foundation B

HDI’s Supported Decision-Making program just got a little bit of extra support.

The Saul Schottenstein Foundation B has generously gifted $2,500 to HDI. The money will be used to help promote Supported Decision-Making in Kentucky. 

“It was a total pleasant surprise,” said Laura Butler, Project Director of My Choice Kentucky. “We were not expecting it, so it was a really nice gift.”

The Schottenstein Foundation exists to help supports projects that build community and inclusion. It was named for Saul Schottenstein, who contributed greatly to his community and was frequently known as “Uncle Saul” to those in his life.

“It’s sort of a family foundation,” said Jason Harris, who spoke on the foundation’s behalf. He added that disability inclusion is a very frequent focus for the foundation’s efforts. 

And a focus on Supported Decision-Making plays heavily into that focus. Harris said that fostering as much independence as possible is an important goal of advocacy efforts, and Supported Decision-Making is a big part of that. 

We all need support in some sense making decisions and building up people feeling confident that they can make decisions and that they can trust people and have a network of support,” he said. “Asking for advice doesn’t mean you’re not competent or somebody needs to make a decision for you…I think it’s important because I think there’s still a lot of things around disability that assume lack of capacity.”

The money will help HDI spread the message about Supported Decision-Making. That includes helping inform people on what it is and how it works, demonstrating how it can help, and sharing stories on the people for whom it has been life-changing. 

We’ve had this project in different forms for about seven years and it’s still a struggle to get the message out,” Butler said. “We’ll definitely be using it to provide some materials and things to spread the information about that. We’ll also be using some of the funds to do some videos or other kinds of stories with people who use Supported Decision-Making.”

Learn more about HDI’s Supported Decision-Making project at mychoiceky.org. 

Young man with fair skin and dark hair wearing a t-shirt, shorts, and tennis shoes

HDI Staff Spotlight on Adam Potter

For much of his college career, Adam Potter struggled to find the right path. Despite being an avid musician, he didn’t feel like his initial music performance major was a good fit. After changing his major several times, something clicked when he found Broadcasting and Electronic Media. 

“I don’t like things with one answer. I’m not a math or science guy because you’re finding one specific answer,” he said. “My favorite thing about video was that you could be as creative as you wanted with it as long as you met the parameters of the [assignment]. And I definitely took advantage of that a few times, especially with my friends.”

Potter’s creativity and passion for video and sound has given him lots of opportunities since graduating, including becoming the Senior Video Coordinator for HDI.

“Any time there’s a video, podcast, or digital media product that any HDI project creates, it will usually go through me,” he said. “So I’m either making it or coordinating it, or making sure that once it’s made, it’s accessible and it’s ready to be posted.”

During his time with HDI, Potter has worked on a wide variety of content from interviews about people’s lived experience to educational and instructional videos. He’s also produced in collaboration with outside organizations.

One of his favorite projects was the 2020 video celebrating the 30th anniversary of the Americans with Disabilities Act. Another was a course on community health and safety during COVID that his team constructed from its conception.

“I have staff who support me and a supervisor who’s really helpful to me and helps me meet my goals,” he said, commenting on the creative freedom and positive office culture at HDI. “I get to meet a ton of really nice people…we get a lot done, but it’s cool knowing everyone will support each other and be nice to each other, too.”

Outside of work, Potter enjoys exercising creative freedom in other ways. He’s a drummer for two Lexington-based bands: Three Arm Thief, a progressive metal band, and Family Dog, a funk rock band. If you hang out in places like The Burl and Green Lantern, you might have the opportunity to hear them perform.

Staff spotlight of Carolyn Wheeler

HDI staff spotlight on Carolyn Wheeler

Carolyn Wheeler’s heart broke when she came across a book called Christmas in Purgatory on her mom’s bookshelf. 

The book was a photographic essay on the conditions in large, state institutions in the Northeast for people with intellectual and developmental disabilities. It was first published in 1966. She later had a job in such an institution in the summer of 1972. Wheeler found the conditions tragic and abhorrent. Ever since, she’s been fighting to ensure that no one ever has to spend a Christmas in that purgatory or anything like it again.

These days, Wheeler works with HDI in a variety of capacities. She is involved in creating training and providing technical assistance for the staff in the Supports for Community Living and Michelle P waivers, dispelling misinformation around disability benefits and work, and connecting people with tools to help them navigate life. 

When asked for a unifying theme around her work, she said, “It’s helping people to understand what resources are available, to help people think beyond the service system, how to have a good life. I think of the service system as a means to an end. It’s not an end in and of itself.”

She also noted that she works to ensure that the people with intellectual and developmental disabilities have unpaid relationships in their lives. 

“I went to college in Washington, DC and worked for an organization where I learned about radical thinkers for the time,” she said. “That led to my going to graduate school at Syracuse University, which created some phenomenal learning opportunities.”

Then, in the 80s, she returned to Kentucky and started working with HDI.

Today, she’s seen some monumental changes in the field – and been directly involved in causing a few of those changes and writing some of the legislation that enacted them. In her view, there’s a lot of problems to address still, but we’ve come a very long way.

So what happens that makes monumental change like that possible?

“Your heart has to be broken,” she said. “I think it’s important you have to be part of a larger organization. There are organizations that formed in the fifties and sixties to help address many of the injustices. One needs to always learn. You have to do this in community.”

It’s also important, she said, to get to know the people on whose behalf you’re working. Wheeler has had multiple friends with intellectual and developmental disabilities over the years. When she talks about how people need friends in their corner who aren’t paid to be there, she speaks from the experience of having been that friend for several people.

Beyond work, Wheeler enjoys a good book and a good live performance. She’s been fortunate enough to see Miss Saigon at the Kennedy Center and has seen Hamilton twice.

Over her life, Wheeler feels fortunate to have made a career of work she loves with people who believe in it, and to have helped shepherd real change into the community.

“I’ve had a phenomenal, phenomenal work life through HDI,” she said. “I hope other people have that, whether it’s here or somewhere else, that you have people who are friends, but also colleagues that you journey with throughout your career. 

Read Christmas in Purgatory here: 

https://mn.gov/mnddc/parallels2/pdf/undated/Xmas-Purgatory.pdf