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State of HDI: Communication Q&A with Jacqui Kearns

Transcript

[Patti Singleton]

All right. Hello and welcome and thank you for joining us on the state of HDI. A podcast of the University of Kentucky Human Development Institute. This is Patti Singleton. And with me in the studio again is Jacqui Kearns, program director of Communication Initiatives. Jacqui has spent her career as a champion of students with significant disabilities and ensuring all students have access to communication. Jacqui, welcome.

[Jacqui Kearns]

Thank you for having me. I’m excited to be back.

[Patti Singleton]

Yes, And this is a follow up to the episode four of the state of HDI, where we had an opportunity to really kind of talk through what communication is and why it’s important. And today we are going to actually walk through some facts or fiction based on Jacqui. A lot of the information that you’ve gathered over your career.

So what I’ll do is state something and then you can follow up with whether that is actual fact or fiction. So to start the absence of clear expressive communication, like oral speech or a sign and the perceived presence of intellectual disabilities means that the student may not benefit from communication intervention. Jacqui Is that fact or fiction?

[Jacqui Kearns]

That is fiction. The fact is the belief that children who experience delays in communication and cognitive development are unable to benefit from language intervention has not been substantiated. And that’s from our researchers. Buchanan and Miranda and the National Joint Committee on the Communication of Persons with Severe Disabilities, which still exists. Their most recent one is 2016. So, there is no literature that says students with intellectual disabilities will not benefit from communication intervention.

All students benefit from communication intervention. I can’t say that strongly enough, loud enough. And the more emphasis, less emphasis. It’s truth or intervene. Do it now.

[Patti Singleton]

For our next one. Speech language services should be discontinued if the student is not going to use oral speech. Jacqui, is that fact or fiction?

[Jacqui Kearns]

That is also fiction. The fact is that speech language services should be continued in order to facilitate language development. The use of robust augmentative alternative communication systems or devices, literacy and social engagement. And this is part of the American Speech and Hearing Association practice guidelines. So releasing students for students from services based on their lack of development of progress in oral speech is fiction now progress in learning to use a device depends on the extent to which the people in their circles, their communication partners use that device with them.

[Patti Singleton]

All right. Jacqui, next fact or fiction? The student’s perceived level of cognitive functioning has an impact on their candidacy for use.

[Jacqui Kearns]

And this one is also fiction. And very similar to the first question we had. The fact is, no empirically validated method for making candidacy decisions based on cognitive ability exist. That was in 2003, and it continues to this day. There is no empirical validated data to say, well, you have a severe disability, therefore you aren’t eligible. That is incorrect.

What is more important is that we find the factors that impact a student’s ability to communicate, and we mitigate those factors. And we found the right system that matches them their abilities.

[Patti Singleton]

So next, Jacqui fact or fiction? Inclusive settings are not conducive to intensive communication intervention.

[Jacqui Kearns]

Well, interestingly, this is kind of counterintuitive. This is also fiction. The fact is students with disabilities and communication challenges in general, education classes were involved in significantly higher levels of communication interactions than those in self-contained settings. So that was in 2004 and then most recently repeated in a study by Kathy Ji in 2018 or 2019, in a randomized pairs study where communication improved so students in the inclusive classrooms who had communication needs significantly improved when compared to the peer who was in a self-contained classroom with a similar level of communication need.

So inclusive settings counterintuitive but inclusive settings are the best place for students with complex communication needs because of the presence of robust peer of peers who have robust use of communication and language.

[Patti Singleton]

Next, we must require the student to use the AC device for all communicative intentions. Is that fact or fiction?

[Jacqui Kearns]

Well, best fiction too. The fact is we all use a variety of ways to communicate our intentions. We use facial expressions, we use body language. We do use our vocalizations or our words and those are, in our words are effective. But that means that kids need to have devices that have words on them. So we want to we want the students to use the device for the things that that they can’t communicate otherwise.

And for the purposes that require our more robust system for communication, for making sentences, for saying I hurt, I hurt here, my fingers hurt, rather than pointing and maybe getting it or not being able to point. And I have something that hurts and not be able to tell you.

[Patti Singleton]

So, fact or fiction? AC as instead use interferes with the development of speech.

[Jacqui Kearns]

You know, I’m so glad you this one is in here. First of all, a speech generating device is an SD speech generating device. And the fact that it interferes is a big miss. The fact is AC has been shown to facilitate the development of oral speech. And we’ve seen this over and over in our core vocabulary training, even with a folder that has pictures on it that makes sentences when the model, when the communication partner models the use of that folder, they have to slow their speech down because they have to find and point to the picture.

I want more, which is different than I want more if I want more. When you slow your speech and you model and most people are modeling backwards to you know that you give the person the communicator, enough time to process what you just said. And so that improves their use of verbal speech. So does it make a huge improvement?

I don’t know. We don’t know that. But it does improve, improved significantly. So that gives them another mode. They have both a speech generating device for when it’s not working, but then that also gives them some improvement in some of the other modes that they use.

[Patti Singleton]

All right, Jacqui, last one factor fiction Aided language modeling is an evidence based practice for communication intervention.

[Jacqui Kearns]

And that one is the fact it is an evidence based practice. And I just described it. When you are using a device and you are using it and you’re pointing to the pictures for the student, and what’s important about aided language modeling is there’s not a requirement that they follow the model, just that you model. When we teach children to speak, we don’t say now say it.

We say, “Oh, you want more? Okay, here’s more.” When you’re modeling, you go, “Oh, you said you want more.” So, you’re showing them how to use the device where the words are. The words don’t move on the page. They stay in the same place. And then we go ahead with the communication exchange. They get to see how it works.

Then when they need to use it, they’ll be able to find it.

[Patti Singleton]

Jacqui, thank you again for sitting down with us today. And any last words.

[Jacqui Kearns]

I would say, the last word is never too early. It’s never too late. Using a device does not make an individual dependent on it. And we want to use all the communication modes that a person has. We want to use the device, but we also want to use all the facial expressions and body language and all the ways that we all communicate.

And we want to be good communication partners. And maybe our next segment will be how to be a good communication partner. Thank you for having me.

[Patti Singleton]

Absolutely. Thank you.

group picture of HDI staff members serving on panel presentation

Addressing Ableism in Anesthesiology to Support Diverse Patients with Disabilities

Practitioners working in the UK Healthcare Department of Anestheshiology believe it is crucial to recognize and dismantle ableism—the discriminatory attitudes and practices against people with disabilities. In March, staff from the UK Human Development Institute (HDI) were invited to participate in a panel presentation to foster awareness and promote change by addressing ableism within medical education and clinical practice.

The following staff from HDI participated in the panel to promote and support a more equitable healthcare system through the integration of disability awareness and anti-ableism principles.

Tony LoBianco, PhD is the Director and Principal Investigator of the Kentucky Post School Outcome Center (KyPSO) and Research Analyst at the University of Kentucky’s Human Development Institute (HDI). Dr. LoBianco has an extensive background in research methods and evaluation with advanced degrees in political science and public health. He is a member of the Kentucky Congress on Spinal Cord Injury. He was a past recipient of the Carol S. Adelstein Award (leadership and academic excellence for student with disability at UK), and the Paul Kevin Burberry Award (advocacy for persons with disabilities). He has been a member of the Statewide Council for Vocational Rehabilitation, and currently is a member of the Kentucky Interagency Transition Council, the Underserved Populations Engagement Committee (part of HDI). Dr. LoBianco is a frequent lecturer throughout the University on disability, postschool outcomes and research methods. Dr. LoBianco is a quadriplegic due to a Spinal Cord Injury that occurred in 1991.

Nicholas Lamar Wright, PhD is a champion of diversity, equity, inclusion, belonging, & accessibility. He is a nationally recognized, award-winning higher education leader, scholar, and practitioner who excels at making connections and building inclusive cultures. Dr. Wright serves as the Director of Diversity, Equity, & Inclusion for the Human Development Institute at the University of Kentucky. Dr. Wright identifies as a multiracial (Black/White) man with a traumatic brain injury, who graduated from the University of Louisville with a Bachelor of Science, Master’s in Education, and Doctor of Philosophy in Counseling and Personnel Services, specializing in College Student Personnel.

Austin Nugent is a Disability Program Administrator at the University of Kentucky’s Human Development Institute (HDI). She has a Master of Public Administration with a concentration in disability policy and serves on numerous state and national boards. Through her various roles, Austin supports multi-system change that advances disability, access, and inclusion. As a result of her personal and family experiences with disability, Austin is familiar with the healthcare system, including the barriers people with disabilities and their support networks face in navigating healthcare.

Courtney Elbert is the Medical and Community Outreach Coordinator for the Down Syndrome Association of Central Kentucky (DSACK). Courtney earned her Bachelor of Arts in English and Secondary Education from Bellarmine University. After teaching English and coaching soccer at Assumption High School in Louisville and being Coordinator of Bellarmine’s Low Ropes Challenge Course, Courtney earned a Fellowship at the University of Kentucky, where she earned her Master of Science in Educational Policy Studies with an Emphasis in Student Affairs. Over the years, Courtney has served as Assistant Dean/Director of Student Activities at Bellarmine University and in various volunteer roles within DSACK and the community. Courtney and her husband have 4 children, ages 21, 19, 17 and 10. Their son Sam has Down syndrome.

Morgan Turner is a Program Education Assistant at HDI. He also serves as a Special Olympics athlete, athlete ambassador, and health messenger. Mr. Turner is a strong self-advocate who has both cognitive and physical disabilities, he was born with hydrocephalus, abnormal legs and left hand. He works across multiple projects at UK-HDI focusing on health, inclusion, leadership, employment, and supported decision making. Mr. Turner was invited to participate in the national Special Olympics Inclusive Health Work Group. Mr. Turner is an expert peer health educator and has co-facilitated numerous inclusive health promotion programs. Morgan is quite familiar with anesthesiology, as he has had many surgeries in his life, including having a new shunt placed into his brain.

Moderated by Lindsey Mullis is the Inclusive Health & Wellness Director for the University of Kentucky’s Human Development Institute working to promote inclusive health for people with disabilities and the communities that serve them. Ms. Mullis is a certified Health Promotion Clinical Director for Special Olympics and an expert in applying universal design strategies to health programs and services. She has over 15 years experience working in the disability community. Ms. Mullis is also a strong parent advocate for her daughter with Down syndrome and a vision disability.

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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.

two people seated on a couch talking

Exploring the Intersectionality of Ability, Race, & Religion

Dr. Nicholas Wright and Maria Kemplin, staff at the University of Kentucky Human Development Institute, received a University of Kentucky Office for Institutional Diversity Award to support programs that are student-centric and foster collaboration through partnerships that address the important of diverse views and cultures. In partnership with the Martin Luther King Center and the Disability Resource Center, staff will explore the intersectionality of ability, and race.

Intersectionality is a framework for understanding how various social categories interact to create unique experiences of discrimination and privilege. Most people understand race is a concept of diversity, but ability has been historically omitted from this conversation and religion is another concept that is absent from conversations surrounding DEI.

This award will be used to host an educational event for all students, staff, and faculty members to gain a better understanding of this multifaceted experience in diversity. By gaining exposure and learning about intersectionality, we can address and dismantle systems of oppression to better support all students holistically.

Watch for more information about this exciting event at hdi.uky.edu.

Maurice Dawson staff photo

2023 Jacki Shouse Service Award Dedicated to the Memory of Maurice Dawson, Jr

Jacki Shouse began working at the University of Kentucky Human Development Institute in March of 1990. She accepted her first position with the Human Development Institute in February of 1998, where she spent the next 19 years until her retirement. Although we miss her greatly, giving the annual Shouse Service Award gives us an opportunity to reflect on what she meant to HDI.

This award is given to an HDI staff member who demonstrates excellent job performance through their contributions to increase efficiency, provision of high-quality customer service, increased cost savings, or enhanced daily operations. The candidate must be responsive, respectful, and work collaboratively with others.

This year’s award is dedicated to the memory of Maurice Dawson, Jr., Computer Support Specialist. Nominations were received from multiple staff members who shared special memories of Maurice and his impact on HDI.

“Maurice took time to get to know each colleague in such a unique and personal way. He brightened everyone’s day with his dry sense of humor, incredible wit, and silly memes at what always seemed to be sent at the perfect time.”

“He juggled so many tasks at Coldstream and made it look effortless”.

“Maurice always made folks feel like they were his top priority, even though there were hundreds of us.”

We are grateful for another opportunity to remember our colleague and friend.