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State of HDI: Quality Improvement and Data with Laura Butler

Transcript

[Patti] Hello, and welcome to the State of HDI, a podcast of the University of Kentucky Human Development Institute. I’m Patti Singleton, and in the studio with me today is Laura Butler, director of the Kentucky Core Indicators Project. Laura, it’s so good to have you here.

[Laura] Thanks, Patti. I’m happy to be here.

[Patti] Laura, today’s topic is on quality improvement and data. So, tell me about this project.

[Laura] So, the National Core Indicators is a project where we survey adults who are receiving services from the state. So, in Kentucky’s case, it’s two Medicaid waiver services, the Michelle P waiver and the supports for Community Living waiver. 48 other states also participate in the survey. And there are other surveys within the project as well.

[Patti] So, 48 states, that’s a lot of data. So, based on the data you’ve collected, and you’ve seen, how is Kentucky performing as compared to some of the other states?

[Laura] So, it depends on the items that we look at. And that is one of the things that our quality improvement committee does look at is to see how Kentucky does rank in terms of some different areas. They call them indicators for this survey and to see how Kentucky is performing nationally, and compared to some other states that might be benchmark states for us.

[Patti] And you mentioned a committee, can you tell me who is represented on that committee? 

[Laura] Yeah, so the committee is made up of some other HDI’ers, as well as some folks from different state agencies, including the division of developmental and intellectual disability, and also most importantly, family members of people who are receiving the services and people who are actually receiving the services.

[Patti] So, I assume this dataset can really help people with advocacy and policy efforts.

We’re seeing that happen more and more on a local and state level, which is really exciting. And then the data are also being used for federal quality management and assessment measures.

[Patti] So having such a large data set likely also gives a great picture of progress of people with disabilities over time. And so, what are some of those trends? 

[Laura] As with everything else, we saw changes during COVID. We did stop surveying in March 2020, when everything else stopped. But we did have about three fourths of our surveys completed at that point. So, we did look at that data as an immediate pre pandemic snapshot. And so, we – like the rest of the country – saw people, fewer people working, fewer people spending time in the community, things like that. But we’ve seen a really significant rebound in that in the last year. The survey has changed somewhat, it does change in response to different things that are going on in the community. So, there are survey questions that have been added to measure what is called often the final rule or the settings rule that Medicaid has. And that’s about how people live as you would think with the settings rule. Those are newer questions. So, we’re seeing some changes there. As people, as agencies and providers try to get in line with that role. We see other changes as well in terms of employment, it goes up and down. Other items in terms of people who have meaningful relationships, or people who feel lonely, those go up and down. But generally, we see positive trends for Kentuckians in those items.

[Patti] I certainly think a lot of people have probably a stress response when we think about data. And so, tell me how this project is making data into information we can all use.

[Laura] Yeah, so it’s really important for us that people use the data, the big survey that we use is collected directly from people who are receiving the services. So, it is a really important perspective. So, we want to see it used. So, what we do is present the data in a number of different ways. We have just the data tables for people who are really into just raw data and looking at that. We have those out there. Then we also work to create some easy-read documents. The National – National Core Indicators folks do that as well with a larger data, but we do it with the data that we see here in Kentucky and specifically with the items that the quality improvement committee looks at. So, we work with people with disabilities to help us develop those and make sure that they work for a different variety of people. So, we probably have some that are meant for provider agencies, some that are meant for people who are receiving services, others that can be used for policymakers.

[Patti] And we’ll make sure that we have links to those in the show notes today. So finally, what changes do you see in the future?

[Laura] So, it’s really hard to tell. I think the national folks that design the survey are really responsive to what is happening in the community and what’s happening with policy and politics, honestly. And so, as things change, we’ll see that change as well. One of the issues that’s really big right now is getting enough people to provide services. So, the workforce of people who are providing services is really challenging right now. And that really impacts the quality of life for people who are receiving these services. So, we’re seeing right now the emphasis on that workforce, the direct support professionals, and we’re seeing a lot of emphasis on making sure that those people are retained and paid well and treated well, and we do have a survey. It’s called the State of the Workforce survey that’s specific to measuring that in terms of compensation and retention of the direct support professionals.

[Patti] Well, Laura, it was so great to sit down with you today and learn more about your project.

[Laura] Thanks for having me, Patti.

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.