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

Two people seated on a couch talking

HDI Celebrates National Mentoring Month

January is National Mentoring Month, and that makes it a great time to highlight HDI’s Disability Mentoring Program.

The program pairs people with disabilities with students who want to learn more about their experiences.

“The thing that makes it work is that people that are actually in the program, get that firsthand experience with disability. They get to talk to somebody that’s living the life,”said Jason Jones, coordinates the program alongside Elizabeth Thompson.

“The cool thing about this program is that it’s not all 19 or 20 year olds in college, it’s people in different places and their careers,” Jones said of the program’s participants.

The idea, Thompson said, is that both mentors and mentees learn from the experience.

“Our goal is to help build more inclusive communities, and improve the quality of life for people with disabilities, and for our LEND students, who are graduate students…to go out into the communities with a better view of that lived experience,” Thompson said.

For Jon Drummond, who went on to work with HDI as a research assistant, the program not only resulted in a lot of learning, but also a long-term friendship.

“We realized, I think, that we were two people that could probably be an honest sounding board for each other,” Drummond said.

The mentor Drummond was paired with had his larynx removed and used assistive technology to speak. While Drummond had never had a similar circumstance, he found that he and his mentor had a lot else in common. They were both PhD students, and Drummond found it interesting that after his mentor completely changed the direction of his dissertation research during this process to focus on others who had similar disabilities.

“He was venturing into a place and experience and subculture that he did not know well. But it was also a subculture that simultaneously was of unlimited value to him, because not only did he use it for his dissertation, he learned a lot from the people he interviewed who also had gone through a similar thing about how to navigate the world, how to make up for things that were frustrating, how to make up for things that he saw initially as deficits all the later maybe they weren’t deficits, they were just different,” Drummond said. “One of the responses was one of his advisors saying, ‘You can’t not do this.’”

Samantha Harrison, meanwhile, served as a mentor for the program and found that it allowed her to open up about subjects that she’d previously had a hard time talking about.

“This program was the first time I had ever disclosed my own disability to a learner. I do a lot of training in my work in the disability field,” Harrison said. “Oftentimes it’s not something that I feel comfortable disclosing because I’m usually in some kind of position of supervision. As I go through my own journey of exploring my neurodiversity, it’s becoming easier to talk about it. At the time that this session occurred with my mentee, it was the first time I really had put that out there. It was a very unique experience and something that I’m still learning from.”

She also appreciated the chance to share her expertise on systems and supports for people with disabilities for a new generation that was unfamiliar with them.

“This opportunity was an incredible way to help increase awareness of self-direction, especially among young professionals. she said. “As we deal with this caregiver crisis and the workforce issues that we’re having, we have to educate young people about the options for long-term services and supports. And I think there’s still a large stigma that if you need long-term services, that you end up in a nursing facility or other institution. Changing that stigma starts with educating people about options. How can you decide to hire your own people to support you if the only option you know is hiring an agency or going to a nursing home?  Mentoring learners in this program about long-term support alternatives and how all people, particularly people with disabilities, can contribute to a more inclusive future is a great place to start.”

According to Jones, that’s the ideal – both the mentor and the mentee grow from it.

“Both sides should be getting something out of it,” he said. “Success, to me, is when the mentor and the mentee both say ‘I enjoyed this relationship, I enjoyed the conversation, I really feel like I’ve learned something.’”

two people talking and laughing

Making Connections

As Executive Director Dr. Kathy Sheppard-Jones tells it, 2023 was a year of connections for the Human Development Institute.

Connections, according to Sheppard-Jones, are a key aspect of how we do our work – one that can extend beyond the needs of individual projects. “Grants end. Leaders will come and leaders will go. If we make connections across people, across organizations and across efforts, we will endure and we will continue to build on what has been accomplished. That is particularly important for an organization like ours,” Sheppard-Jones said. “We want to innovate. We do not want to make silos full of re-invented wheels. We are doing important work. We will continue to do so. That takes all of us and a spirit of collaboration, knowing that we are all very different and that is our strength in building inclusive communities, addressing inequities, and improving lives of all people who experience disability across the lifespan.”

Throughout the year, HDI worked hard to forge new connections, strengthen old ones, and ensure those connections help it work towards its mission. One of the most exciting new connections this year was with the state and its Olmstead planning activities. “Many of us are familiar with the Olmstead decision in 1999. It found that unjustified segregation of People with Disabilities was discriminatory and violated the ADA. This was a landmark case,” Sheppard-Jones said. “HDI participated in developing Kentucky’s first Olmstead Compliance Plan in 2002. HDI will again have a leadership role in the next Plan, in partnership with people with disabilities, family members, state agencies and community partners. That connection will help ensure that Kentuckians with disabilities have choices and agency when it comes to community-based services, long-term care options, housing opportunities and employment.

HDI also built up its connection to the University of Kentucky, furthering its work with the Department of Early Childhood, Special Education, and Counselor Education. With this alliance, HDI launched the College and Career Studies program during the 2022-2023 academic year. It also worked with the university to establish a Disability Employee Affinity Group. “This is especially exciting because it is a new offering of the University. I am hopeful that it will be an avenue to help change the dialogue about disability and increase pride and sense of belonging for staff and faculty,” Sheppard-Jones said. “It is also a next step toward gathering data about disability in higher education. Conducting research and educating students is part of our charge at HDI and how wonderful it is to recognize our own University as leading the way building a workforce that is inclusive of disability. This can be an exemplary connection that we can amplify together.”

Outside of the University community, HDI worked alongside the Chamber of Commerce to hold the inaugural Inclusive Workforce Summit, creating new connections with professionals across the state, especially in the healthcare and employment fields.

“With over 250 registrants, attendees at this event last September connected with each other to consider how we can all improve opportunities for a highly underutilized segment of the talent pipeline – people with disabilities,” Sheppard-Jones said. “It was an incredible day, with connections to resources, to new ideas, and to new people who are committed to continuing the conversations in the days ahead.”

But connections are not just between organizations – they are also between people, and HDI values meaningful connections between its employees as well, engaging in intentional efforts towards fostering friendships among coworkers and an inclusive workplace. “Everyone works for different reasons, and we all have different interests and motivation. In recognition of this, we try to provide many different ways for people to connect with each other. This can be through our own seminars, trainings, office hours and events – thank you to Kristen Dahl and Dr. Nicholas Wright for your ongoing amazing offerings; or it can happen through connecting our staff to other activities UK offers that may be of interest,” Sheppard-Jones said. “How lucky are we to work in an environment that nurtures so many different learning opportunities?”

And it goes beyond learning opportunities that one would traditionally associate with a university. “It is also UK Health and Wellness ongoing events, finding a self-paced training on Excel, or going to a concert at the Singletary Center for the Arts. I mentioned the Disability Employee Affinity group, and there are several others as well” Sheppard-Jones said. “There is so much we can experience here, if we are interested.”

Looking to the future, HDI hopes to further its work in the early childhood field. “HDI continues to do powerful early childhood work under the leadership of Mary Howard, Dr. Joanne Rojas, and an incredible team of content coordinators, and regional and community level powerhouses. Early childhood efforts are connected to workforce, families, and communities in many ways,” Sheppard-Jones said. “I want to help strengthen our early childhood connections to workforce and employment and build awareness and opportunity for career exploration for children with disabilities and developmental delays at the earliest ages. It is never too late, but it’s never too early to start making connections. And we must do this if we want to improve outcomes as children grow up!”

Sheppard-Jones is also thrilled about future connections that are already planned.

“I’m also really excited about some plans that are in store from our Research and Evaluation Committee,” she said. “That group is going to expand to include faculty from across the University. This will bolster connections for new research, expand our audience for training, and broaden outreach to students. All these efforts increase awareness of HDI at UK. We do not want to be a well-kept secret!”