HDI Celebrates Developmental Disabilities Awareness Month 2023 with Amanda Stahl

HDI Celebrates Developmental Disability Awareness Month

This month (March), HDI celebrates Developmental Disability Awareness Month. For some people, that may lead to questions about what defines a developmental disability. Developmental disabilities are conditions that begin during development and usually last throughout a person’s life.

For Amanda Stahl, LCSW, it’s a wide spectrum. 

“It’s a disability that happens before the age of 18,” Stahl said. “A disability that affects your daily life skills. It affects your development, how you become who you are as a person.” 

But at the same time, Stahl stresses that there is a human being behind every label and every diagnosis. 

“In my work, I don’t focus only on definitions. I focus on people’s stories,” she said. 

As part of her work with Merge, an HDI project focused on improving mental health access for individuals with mental health conditions and developmental disabilities, she’s helping ensure those stories are told. 

Merge seeks to improve the mental health systems that support people with co-occurring mental health conditions, and intellectual and developmental disabilities. Stahl is one of the researchers interviewing people with lived experience for Merge. 

“Some of the work that I’m doing is going around Louisville and going around to different parts of the state and collecting people’s stories around their experiences with mental health and disability,” she said. “What were the good experiences they had, what were the negative experiences they’ve had, what would they want to recommend to other direct support professionals and providers?” 

Stahl thinks that isolation, loneliness, and societal expectations placed onto some people with disabilities can have a tremendous negative impact on the mental health of individuals with disabilities. 

“It’s not done on purpose,” she said, adding that some have difficulty find more positive ways to think about themselves until they find ways of building community and experiencing inclusion. “People with disabilities may be isolated from other people with disabilities, including older people with disabilities,”

She also noted that she sees patterns in the interviews she’s completed. For example, she finds that even experienced mental health providers can have difficulty working with people with developmental disabilities, especially those who are in more controlled environments. Sometimes individuals, she says, may not feel like they have the space to feel or process their emotions. Another thing that she noted is that a lot of individuals with lived experience feel like outsiders. 

“Knowing my own story, a lot of their stories are very similar,” Stahl said. “I felt like I was the only one until I met this one person.” 

Stahl hopes soon to do more research on individuals in day programs to get an even wider view on what the community’s needs are. From there, the information will be used to develop training that will be designed for individuals and providers around the state. 

“I’m trying to get stories from the most impacted people,” she said. Ms. Stahl stressed that people often underestimate others due to disability – something she says is a mistake. 

“There may be limitations to what someone can do,” she said. “But always assume people can do more than you think they can.”

Amanda Stahl, LCSW, is a Disability and LGBTQ+ Activist from Louisville, Kentucky. Amanda is the lead organizer and director of a non-profit organization called the Independence Seekers Project (ISP), organized and developed by people with intellectual and developmental disabilities.

Blue graphic with PEER MENTORING in bold white letters

The University of Kentucky Human Development Institute (HDI) Completes Certification in Inclusive Mentoring Practices through the National Disability Mentoring Coalition (NDMC)

The University of Kentucky Human Development Institute (HDI) has successfully completed a four-month-long certification program on how to create mentoring programs, activities, and events that are inclusive to youth, volunteers, and staff with disabilities.

This certification was run by the National Disability Mentoring Coalition (NDMC) – an initiative of Partners for Youth with Disabilities (PYD) – in collaboration with MENTOR. The Fall 2022 cohort was the third time this certification has been offered, and it featured participants from 16 unique mentoring organizations across 10 different U.S. states and 1 international organization.

“We are thrilled to recognize the accomplishments of our certification cohort,” said Kristin Humphrey, the NDMC Director and one of the lead facilitators of the certification. “Each participating organization created a detailed Inclusion Action Plan, and they have all made huge strides in making their mentoring program more inclusive of people with disabilities. This certification is an important step for the mentoring field to take to become more inclusive and accessible.”

To complete their certification, staff completed over 20 hours of online coursework, contributed to weekly discussion posts, and attended live webinars and cohort convenings, while also creating a plan to improve the disability inclusion practices in their organization. HDI was one of 16 organizations that completed their full certification.

HDI staff received training in a wide range of topics: the various models and definitions of disability; ableism and inclusion; disability rights and the ADA; Universal Design; inclusive language and communication; inclusive marketing and outreach practices; and more.

To learn more about the Disability Mentoring Certification or enroll in an upcoming cohort, visit www.disabilitymentors.org.

About the NATIONAL DISABILITY MENTORING COALITION: The mission of the National Disability Mentoring Coalition is to increase the awareness, quality and impact of mentoring for individuals with disabilities across the nation. The NDMC has over 340 members from over 170 non-profit organizations, academic institutions, government agencies, foundations, and corporate entities.

About MENTOR: MENTOR is the unifying champion for quality youth mentoring in the United States. Our mission is to expand the quality and quantity of mentoring relationships nationwide. Potential is equally distributed; opportunity is not. A major driver of healthy development and opportunity is who you know and who’s in your corner. 30 years ago, MENTOR was created to expand that opportunity for young people by building a youth mentoring field and movement.

About PARTNERS FOR YOUTH WITH DISABILITIES: PYD’s mission is to create a world where young people with disabilities will be able to live with dignity and pride in who they are, and to lead self-determined lives filled with purpose. To make this happen, we build the skills and abilities of young people with disabilities, and increase the inclusivity of workplaces, organizations, and communities.

HDI Podcast Logo

State of HDI Podcast Episode 5 on the KY LEND Program

LEND stands for Leadership in Education for Neurodevelopmental and other related Disabilities. Listen as Caroline Gooden and Stephanie Battistini describe why this program is essential for a team approach to providing care to people with developmental disabilities.

State of HDI Podcast Episode 5 on the KY LEND Program Transcript

State of HDI Episode 5: KY LEND Program

The Human Development Institute hosts the State of HDI Podcast. The views and opinions expressed in this program are those of the speakers and may not reflect the views of the University of Kentucky. A downloadable transcript is available in the description. Thank you for listening!

Patti Singleton

Hello and thank you for tuning in to the state of HDI, a University of Kentucky Human Development Institute podcast. This is Patti Singleton. With me in the studio are Caroline Gooden, and Stephanie Battistini. Caroline is the training director at HDI and Stephanie is a developmental behavioral pediatrician at the University of Louisville. Welcome to you both. So Caroline, tell me what the LEND is. 

Caroline Gooden

I would be glad to tell you about the LEND. LEND stands for Leadership in Education for Neurodevelopmental and other related Disorders. It’s an exciting training program. It includes nine trainees or students and interdisciplinary faculty team and professionals across the state. Each year we have nine trainees including a self-advocate with a disability, a family member of a person with a disability and seven graduate students. The students attend college at UK, University of Louisville, and Eastern Kentucky University. Their areas of study are intentionally varied to produce an interdisciplinary learning setting. Their fields thus far have included medicine, education, psychology, special education, physical therapy, speech and language therapy, kinesiology and health, music therapy, educational leadership, and social work. Our faculty members are from the same areas, as well as Rehabilitation Science and Early Childhood.

Patti Singleton

That’s fantastic. And Stephanie, as a LEND trainee and Kentucky transplant, tell me what the program was like for you.

Stephanie Battistini

Well, Patti, the program for me was fantastic, especially as a Kentucky transplant, it allowed me to learn more about the Kentucky landscape as far as what the community that I am serving as a developmentalist; like what their struggles are, what their strengths are, and how to best approach them. And you can imagine the LEND classes being more like a discussion, and even a brainstorming session discussing various topics as well as dilemmas that many families and patients face throughout Kentucky.

Patti Singleton

That’s great. And Caroline, you listed the majors, but can you tell us a little bit about the trainees that have participated in the LEND? 

Caroline Gooden

I would be delighted to tell you about our trainees, we are delighted to have Stephanie with us today who was our – in our first cohort last year has definitely brought a great medical and a really humanistic perspective to our program. So, our trainees are a really diverse group each year. They include students in physical and speech therapies, who are completing rigorous clinical programs, social work students who will work with persons with disabilities, health promotions researchers, clinical psychologists – who will be evaluating and treating persons with disabilities – community organizers, family members, and advocates. Each one is special to us, as we are able to watch their amazing growth over the course of the year. They begin as students; they leave us as leaders in their fields. They form a close collaborative group with their fellow trainees and join a national group of highly respected lead trainees. Several of our LEND faculty are former LEND trainees. Steph is an outstanding example of a trainee with partnerships in Kentucky as a result of her LEND work. Her partnerships include University of Louisville and UK Healthcare, with the Kentucky Department for Aging and Independent Living, as well as continued connections with her LEND cohort.

Patti Singleton

And so, to continue that, Stephanie, can you tell us how the LEND has prepared you for the work that you do?

Stephanie Battistini

Oh, that is such a big question for me, because when truly opened my eyes to many of the resources that Kentucky has available for families and the many patients that I serve, it also allowed me to really build connections across multiple specialties and disciplines. In my practice, I lean a lot on other professionals to help my families and patients learn, obtain skills, and really get what they need from the community to live the most fulfilling life that they can. I think one of the big things that LEND really taught me was the importance of working with a dedicated team to really serve the community of Kentucky the best way that we can.

Patti Singleton

And so, Caroline, tell us what is the reach of the LEND program? 

Caroline Gooden

Patti, that’s also a great question. The LEND faculty and partners are present across many universities, state agencies, and community groups in Kentucky. In addition to our three partnering universities, one of our students Direct Services for Students with Disabilities at Hazard Community College this year. Some of our participating state partners include the Department for Public Health, the Department for Behavioral Health, Protection and Advocacy, The Centers for Independent Living, the Office for Children with Special Healthcare needs, the Kentucky Autism Center, many Human Development Institute state and national projects – including the National Center for Prenatal and Postnatal Resources, Innovative Supports for Autistic Workers, and HDI Center for Assistive Technology. So, you can see that we have a broad reach across partners across the state. Our partnering community agencies include UK’s Early Childhood Laboratory, the Child Development Center of the Bluegrass, the Allegro Dance Project, and more agencies participating each year. We have students placed in each of these settings each year. Stephanie, can you tell us one of the connections you have made and sustained since your time in the LEND?

Stephanie Battistini

Oh, yes. I think one of my favorite connections that I made while participating in LEND was the one with the Office for children with Special Healthcare Needs, as I had the opportunity to not only work with one of my mentors, Dr. Gail Williams, but I also got to work with the wonderful staff associated with the office. As well as with Dr. Mary Beth Bundy, one of – an amazing, licensed psychologist. And it was an eye opening experience as they did their evaluations via Telehealth. And I was able to observe them and observe the ways that they approached these families who live in rural parts of Kentucky, and what sort of resources and anticipatory guidance they gave these families to ensure that their child had the best resources and therapies available for them.

Patti Singleton

Stephanie, the role of an advocate looks different across the specialties participating in the LEND, how has your experience change your perspective of advocacy and leadership?

Stephanie Battistini

So, the biggest thing that I took away from LEND as far as the role of being an advocate and a leader for children with special health care needs is that it truly takes a team or a village to really help their families and the patient to make sure that they are obtaining the right therapies and the right services, and in appropriate timing. So, I think it’s really important that the future LEND cohorts have a passion for advocacy, as not only will you advocate for these patients in your work or professional role, but many times I play an advocate for these children in the school system, or within different therapy programs to ensure that they are getting the right resources or accommodations that they have the right to. In addition, I think it’s really important that as an advocate, you really understand the landscape. You know, unfortunately, with the COVID pandemic, there is a strain on the system. And many programs unfortunately have a waitlist. And I think it’s important that as a developmentalist that I advocate for these patients, and that I try to be as creative as possible in making sure that they understand that they can place themselves on multiple waitlists, and that they should keep me up to date if they continue to have difficulties as time is really important when it comes to early intervention, for example. And lastly, you know, one of my biggest passion is education. And, you know, I and I thoroughly enjoy educating not only my parents, of my patients, but I also enjoy educating our future pediatricians. And I think it’s really important that any learner from any sort of specialty or interdisciplinary profession that works with children with different neurodevelopmental disorders, that they understand how they can advocate, how they can reach out to leaders that can make a change, and how they can get involved in the community.

Patti Singleton

That’s so great, Stephanie, thank you for that. And Caroline, will you tell us what the measure of success for the LEND will be?

Caroline Gooden

I am glad to talk about the measures of success for the LEND. The success of the LEND will be the production of leaders who are trained and ready to improve services with persons with neurodevelopmental disabilities, as Stephanie indicated, across all fields of service. We will also see the success of led by the creation of increased diagnostic and treatment settings, an increased collaboration by professionals across agencies. Woven throughout all these improvements must be the voices of self-advocates, informing the best course of action by persons with lived experience.

Patti Singleton

That’s fantastic. And how can someone apply to participate in the LEND? 

Caroline Gooden

We encourage applications even as we speak, the application deadline closes on March 13th. So, to apply, go to hdi.uky.edu/kylend and scroll down to apply to be a 2023-2024 trainee, and follow the instructions there. Just a simple Qualtrics form that you will use. If you have any questions, feel free to contact us. And again, applications close on March 13th.

Patti Singleton 

That’s great, Caroline. And we’ll make sure that the contact information and that link to the application are included in the show notes. So, Stephanie, and Caroline, do you have any last thoughts that you would like to share before we sign off?

Stephanie Battistini

I just want to say that LEND was an amazing experience. And I hope that LEND in Kentucky is something that continues for many, many years. In my short time here in Kentucky, I can tell you that we need more professionals who have a passion who want to advocate for our children with neurodevelopmental disorders. And LEND is just one of the many ways that not only professionals but families and self-advocates can get involved with. 

Caroline Gooden

Thank you, Stephanie, I agree with what you’ve said. And I would just add that LEND is a unique opportunity for our graduate students, for our self-advocates, for our family members across Kentucky to improve services for children and adults in Kentucky who have disabilities. That really is the goal of our project. And it happens through a unique combination of a mix of wonderfully trained folks whose goal really is to improve services for children and adults across Kentucky. We are a close group of professionals and family members. And we do hope that LEND will be here for years to come to improve the services in Kentucky.

Patti Singleton

Well, thanks to you both for your work and dedication to enhancing the lives of people with disabilities. We’ll make sure that all of the links that we’ve mentioned will be included on the show notes. And thank you for listening.

https://hdiuky.podbean.com/e/state-of-hdi-episode-5-ky-lend/

Find more information about the KY LEND here! hdi.uky.edu/kylend

Application Survey: uky.az1.qualtrics.com/jfe/form/SV_cJeRRQzFDEfWZwy

You may be asked to have an interview as part of the application process. If you have questions or need help in applying, call Caroline Gooden at 859.582.5134 or email cjgood2@uky.edu

The State of HDI podcast explores the initiatives and projects at the University of Kentucky Human Development Institute (HDI). This podcast is part of our ongoing work to bring together the efforts of HDI projects and staff and the ever changing state and national landscape of important issues. Contact patti.naber@uky.edu for more information.

Summer Leadership Camp Experience Group Picture

HDI Summer Leadership Experience Camp Registration Open Now

Over the years, Teresa Belluscio has had a lot of people ask her how to create an experience like HDI’s Summer Leadership Experience Camp.

Many have taken inspiration from it, she said. But none have managed to create something quite like it.

HDI will be hosting its seventh Summer Leadership Experience Camp July 12-15,2023 giving high school students with disabilities the chance to explore their options for choosing a career including a path for training or higher education.

“Camp is geared towards high school students with disabilities entering their junior or senior year,” said Belluscio, who is an HDI Disability Program Administrator. “Students who are thinking about or who have articulated plans to continue their education or training past high school.”

While it had always been held in person in its first few years, COVID necessitated finding a way to make it work virtually, and later years used a hybrid model with some students attending in-person and some attending online. HDI administrators found they liked the additional accessibility that having an online option provided and has offered it as a part of the camp ever since.

“We liked that because we felt like that was more inclusive for students across the state of Kentucky,” Belluscio said.

Students who attend will get the opportunity to learn more about higher education options such as colleges, technical schools and trade schools that includes furthering their education past high school. The camp will give them instructions in how to choose a school that’s right for them, what different types of institutions can offer and how to pay for college. Attendees will also hear about how to navigate some of the unique challenges that students with disabilities can face in higher education.

“We want our campers to hear directly from college students with disabilities about the experience of college”. We talk about academic accommodations and on-campus living that students might want to have and how to advocate for themselves. We offer a panel discussion that includes college disability resource offices discuss how to obtain services,” Belluscio said. “We want to prepare students for their transition from high school to their next step of education.”

“A lot of the students tried the climbing wall. Some of them that tried it had never done it before,” Belluscio said. “Some of the students who hadn’t tried it before found a lot of victory in doing this…I was amazed by a couple of the campers who would just try over and over. Every time they tried to climb, they got a little higher than the last attempt.”

The deadline for registration is March 31. The camp is sponsored by The KY Office of Vocational Rehabilitation, and in-person campers should be Vocational Rehabilitation clients with an individual plan for employment in place. Virtual campers who are not clients will be asked to complete eligibility requirements. Apply at https://uky.az1.qualtrics.com/jfe/form/SV_79iWt1NRUaMfZqK.

HDI Podcast Logo

Episode 4 of The State of HDI Podcast explores Alternate Augmentative Communication (AAC)

Jacqui Kearns is in the studio to discuss what communication and AAC – alternate and augmentative communication are – and how she collaborates to ensure all students in school can communicate. 

State of HDI Episode IV, Alternate Augmentative Communication Transcript

State of HDI Episode 4 Communication

Patti Singleton

Hello 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 with me in the studio 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, Patti. I’m glad to be here.

Patti Singleton

To start, tell us what communication is and specifically AC, which is augmentative and alternative communication.

Jacqui Kearns

So, for my communication partners at Communication Scientists in Disorders at the University of Kentucky, communication is the conveyance of a message through a variety of methods facial expressions, body language, behavior, speech, lang- sign language, texting or speech generating devices. Think about the time when you use a facial expression to communicate a message. Did you smile at someone to let them know you’re happy?

Or did you give that mom or dad look? Your facial expressions do communicate a message. The important part of the conveyance of the message is that it’s understood by the communication partner. AC is any method that augments/improves the communication partner’s understanding of the message. Everyone communicates. That’s a common misconception. Persons who are non-speaking or for those who use speech but struggle with complex communication functions like telling a story.

I might not be able to make the words sound the words to tell the story. The use of AC improves the probability that their message will be understood. And also, it’s kind of important to know that understanding language is not the same thing as being able to convey a message. People who are non-speaking often understand the language. They understand what you’re asking them.

They know they want to tell you something. They just have a hard time getting that message understood or formed through speech. Lots of language pathways, receptive pathways are things like vision, hearing, site, tactile pathways. So, we can understand language in a variety of form forms, too. I used to have a former colleague who was an AC user and we would participate in virtual meetings and he would actually text me his message, which is his answer to or his participation in the meeting, so that I would read it to the group that seemed to be efficient and effective for him.

It gave him time to put the message together. So if you’re using a speech generating device, you have to find the words and you or you have to type the words and then you have to send them. So that so that allowed him a method for communicating that made him understood, conveyed his thoughts and ideas. But I would say them for him.

So, and it didn’t sound like a message app generated out of a device, but he preferred to do it that way. So being a good communication partner is a really important part of communication, but it’s b having that understood message that’s really important in terms of being a communication partner.

Patti Singleton

I think that’s a really great summary. And you know, as a parent and as a colleague, we’ve had a really learn new communication methods, especially after the pandemic and figuring out what virtual meetings are. And I love the point that you made about, you know, the chat because it is such a great way to communicate, and especially when not everyone has the chance to have, you know, oral time or time to respond.

And the chat has really become this great place to have kind of sidebar conversations. So, yes, so a great summary of that. So next, it’s easy to take communication and especially verbal communication for granted. So why is communication important?

Jacqui Kearns

Well, that’s a really important question and communication is absolutely necessary for social engagement, relationships, family, friends, health and safety. If you can’t tell the doctor what’s wrong or where it’s wrong or what hurts or why you feel a certain way, or that you feel a certain way, it’s really detrimental to your health and safety. And those are things that people can’t do for you.

They can say, “Well, I think it hurts over here or I think it’s his tooth on the right side”, not being able to tell that you your teeth are hurting is really a difficult thing. I actually had a friend once that had abscess teeth but couldn’t tell anybody that her teeth were abscessed. So, the only way you could figure it out was if you watched her eat and therefore it was really difficult to tell, and she couldn’t tell us.

So, you can you imagine living for weeks with abscessed teeth. So that that’s just a really important, really important reason. But then there are also things like access to employment and community engagement. You can’t, it’s really difficult to go to work if people don’t know how you communicate or you can’t communicate. You need something or that you communicate to your boss that you’re finished or you need the next task.

And communication for work is really important as well as community. Community engagement. How are you going to go to parties? How are you going to participate if you can’t? If people can’t understand what your views, your ideas, your talents are? That’s really important. Also, self-determination and being able to make decisions for yourself. Choice and control in any decisions.

If you can’t tell somebody that, yes, that’s what I want or no, that’s not what I want or no, don’t do that again, then you are pretty much limited to having other people control your life, where you live, what you do, how you spend your time, what you have for dinner. They’re making those decisions for you and you aren’t able to make them for yourself.

And the thing that goes with all of those is positive school and post-school outcomes. If you don’t have communication, you’re not going to have a job when you leave. You’re not going to go to higher education or on to a new learning activity because you don’t have communication. In fact, you can honestly say that you’ve wasted about 12 years of your life because you didn’t learn the things in school that we go to school to learn, or you may have learned them that you can’t tell anybody that you know, And that’s a really, really important thing.

So this brings me to the story about and Jordan Zimmerman, she is a user, a board chairman for communication first, and she identifies as autistic. And she says for centuries, people with significant speech disabilities have treated us as if we should be seen, not be seen or heard. Our ability, right, and basic need to express ourselves have been routinely overlooked and denied.

Well, if I don’t have words, then I must not have any words. Kind of like our words have been questioned because we do not use typical oral speech to express ourselves. We are we are discriminated against because others cannot or refuse to understand us. And we’re often denied the tools and resources that we need to communicate. And those are some of the things.

Her words are really, really important. Important. Students need to be able to communicate and have their voices heard for all those reasons. Social relations, chips, friendships, lifelong interactions, say health and safety, all those reasons. And if you haven’t seen the film about Jordan’s communication journey, I highly recommend this is not about me and encourage our listeners to give that a book.

Patti Singleton

We’ll be sure to post a link to Jordan’s movie. This is Not about Me in the show notes. So having lack of communication or no communication, it really would be very isolating and really kind of dangerous. So, you mentioned the importance of communication for health and safety. I’ve noted multiple news stories reporting students being restrained and abused in school.

So, what role does communication play in these incidents?

Jacqui Kearns

Well, I’m glad you asked that, because this is a really important thing that I think gets missed often. There’s a strong research base, believe it or not, that documents the direct relationship of the students’ ability to communicate to the presence of problematic behavior. Well, if you didn’t understand that, I do not want that. I’m going to throw it at you because I do not want it.

Well, we tend to we tend to contemplate behavior and not respond to it as if it is communicative and then it escalates, which results in restraint and seclusion of the student. And both of those things are dangerous in abuse and neglect. In U.S. Department of Justice estimates that for men and women with intellectual and developmental disabilities, they’re already at three times the risk for physical abuse, five times the risk of sexual abuse, and for women, eight times the risk of sexual abuse for women who are assaulted more than ten times.

This was documented by a special series and on National Public Radio, Abused and betrayed. And if the person is non-speaking, they can’t tell what’s happening to them. So the likelihood that that’s going to happen will continue. So the being able to tell and I’m telling family members that now and I’m telling teachers this, being able to tell what happened to you, whether it’s a good story or a bad story, but especially if it’s something that someone is doing to hurt you is incredibly important to be able to do so and has a significant communication is a significant role in in protecting students and individuals who are not speaking from abuse and neglect and restraint and seclusion.

Patti Singleton

You talked earlier about the postschool success of students having the communication devices. So can you talk about a little bit more about the research behind that?

Jacqui Kearns

Right. Communicating effectively, as we as I mentioned earlier, is essential to school success, but heavily documented in the literature. And students with the most significant cognitive disabilities have a poorer post-school outcomes than all other students with disabilities. And research, according to our own Dr. Harold Kleiner, suggests that they have the poorest post-school outcomes of all, and meaning that they have limited job restrictions, limited community involvement, limited friendships, social relationships as a whole.

Patti Singleton

So, as you mentioned, HDI has led many of those studies. So what does the data say about communication nationally and in Kentucky?

Jacqui Kearns

Well, I’m really glad you asked that question because we’ve been looking at the communication data now for, oh, about 15 years. And actually, that started the first communication project. The talk project started as a result of the findings of the communication data for the population of students who participate in alternate assessments. And what’s important about that is that those are first assessed in third grade.

So the student is eight years old when we’re first looking at their data, right? And what we found is, which was surprising at the time, this has been about 15 years ago. The first study was and we’ve found it in multiple states because it was a part of the National Alternate Assessment Project. So other states used our tool to look at their data.

But while the majority of students who participate in alternate assessments do use verbal speech, we have about 21% of that population who use single words. And we have about 8% who use natural behaviors or involuntary behaviors. They have no formal communication methods that that is understood by their communication partner. And the communication partner is very watchful and interpretive.

And often that is not the case. So, although they may be intentionally communicating, parents and caregivers observe and interpret those behaviors to determine what the child may want or need. Most of the time, however, given some wait time, what appears to be intentional is unintentional, is intentional. And I give this story. A few years ago, we visited a high school student who didn’t have a formal communication system, and I went with another Dr. Kleiner, Dr. Jane Kleiner, and we asked this student to raise his hand.

And he has really complex motor disabilities. And the moment Dr. Kleiner asked him to raise his hand, I started counting in my head 1000, 1000 to 1003 when I got to 1008, he raised his hand. The way communication works in our natural world, we talk really fast, and we tend to ask way more often and we wait less so waiting more, asking less is definitely the way to go.

But also we wanted to give that student a way to communicate that was more than I guess we eventually were able to use that I guess, to give him a more robust communication system. But if people were waiting and looking really carefully, they would have missed that looking to my right is yes, and looking to the left maybe a little bit.

There’s no and that’s really, really complex. What’s also important to know about these data is two and eight. We found it in eight year olds, but we also found it in 17 year olds and all throughout the grades. That 8% doesn’t change much at all. And so that means that kids are coming to school without it. That means kindergarten through third grade.

They’re still coming to school without it. Even though the literature says never too early, never too late, Some people think, oh, well, I’m going to wait until because if I give them a device, they won’t talk. That’s absolutely not true. Devices help kids talk mainly because it slows us down, right? So more recently, we looked at the data and it’s pretty much the same.

It hasn’t changed an awful lot in the past. I think people are identifying kids better. They’re making better decisions about who is a symbolic language user, who’s emerging and who still needs more words or symbols or is or a way to use symbols and get AC. But and so it’s dropped a little bit, but not but we still have kids coming to school and leaving school without it.

In addition, we know that for adults, about 2% use some sign language, and that’s not sign language as in ASL. This is one or two words like one more. Yes. No, those very simple one word kinds of things that signs for one words. The problem with signs is that most of their communication partners may or may not know, especially community at communication partners may or may not know what those signs mean, and they can’t use them to tell what happened last night.

Or they use gestures. And only about 1% of the adults and the national Core indicator study here in Kentucky had any sort of RC device. So and then to further complicate all of that, we have kids who are English learners who are also AC users or are potential accusers. So last year in our Echo, we had a high school student who was bilingual and using ideas and actually tags wasn’t working for her.

So we got an auditory scanning tool for her to be able to scan and we encouraged the team to have both English and her home language on her communication device. So, she can communicate in both worlds. And that’s really important. You want both worlds. So the data is kind of, yeah, we’re not the only state that has this problem.

Other states do too. But it’s it seems endemic. It seems like, why do we still have this problem?

Patti Singleton

Right? So, tell me what works with students without verbal communication? Is there research to support intervention strategies to improve those communication outcomes?

Jacqui Kearns

Oh, absolutely. I’m glad you asked that. There there’s 20 years of research that says intervention works over 116 studies now. It is probably more like 125 studies now. I’m Dr. Kleiner. Dr. Page and I are still working on a paper about students who are included. And the research is really pretty good in terms of the strategies that work.

Intervention itself works. When a team intervenes and they all work together, that works, and they can get a system and that includes family members. So, communication interventions, remembering that the device isn’t the only way we communicate, that if they communicate through their phones and their eye gaze and their and you understand that and it speaks to you, great.

But don’t forget, they have to be able to tell. So in our communication purposes, they might do well with those things at home because mom and dad can figure that out. But they’re not going to be able to use that. They might be able to use that at school, but they’re not going to be able to use that in community settings.

So they have to be able to have a more robust communication system. Aided language modeling, just like I am. We speak to young children in slow words and when they’re babies and we give them lots of hours, we have to start early with those communication devices and we have to model how to use them. You can’t just hand it to them and then automatically know how to use it.

So and that’s a common also a common misunderstanding. Oh, if I give them a device, they’ll just know how to use it. No, mainly because devices are, as I mentioned earlier, not really efficient. And so we have to make it efficient for them. It has to be efficient and effective for them to be able to use it. And the only way that happens is if we model, we use it too.

We have to do it with them. Peers are awesome. Peer mediated supports help with communication, so access to peers who can model on a communication device. Peers also are very observed and probably better communication partners because they haven’t learned stuff that that probably blinds us in some ways to what that what a person is communicating or that they are communicating.

And then as I mentioned, the team teamwork and collaboration that the speech language pathologist, the educator, the parent, the O.T., the PTA, especially if the student has really complex needs. So those are the things that work and they’re very well documented.

Patti Singleton

So, of all that research, has it translated into policy?

Jacqui Kearns

Well, that’s an interesting one, probably as Jordan Zimmerman suggests, not enough. She’s working on an advocacy level to improve what has happened. But in 2014, there was a Dear Colleague letter from Open Ulcers that says that students with a disability under ADA and Ida, IDA, students with disabilities under IDEO and ADA, we must ensure that a communication for a student with a disability is as effective as communication with a student without disability.

Well, now think about that. It can’t just be one more selecting a choice using a one picture system. It has to be being able to tell what was in the story, who’s my friend, what we did last night. They have to be able to communicate in a more robust way. I have to be able to share my ideas.

I have to be able to share what I learn, what I’ve learned, all of those things. So that was the policy guidance in 2014. Unfortunately, policy guidance is probably not just through a Dear Colleague letter is probably not enough really to make change. I also haven’t seen anybody really pay that much attention to it, unfortunately. So hopefully Jordan’s work and the work that we’re continuing to do will help people make better decisions.

There was a Supreme Court decision a couple of years ago about making it didn’t have to do with communication, but it had to do with adequate progress. And I would ask the question, how can you determine that a student has made adequate progress if they don’t have a way to communicate effectively what they have learned? And I don’t mean to answer the question in point to the answer.

I mean, tell I mean share. I mean interact all of those things. If they don’t have that, how can we say that they have an effective communication system?

Patti Singleton

So, for those students who do require a C, is it affordable?

Jacqui Kearns

Well, it’s more affordable than it ever has been. Now, yes, our communication device is expensive. Some of them are There are some lower tech devices. There are picture boards. I mentioned sign language before switches, dynamic or speech generating devices. But the important thing is, does the communication partner understand and is it robust enough for this for the person to be able to tell?

I’m just going to keep saying that. Is it robust enough for the person to be able to tell? Because if they can’t tell, they may be getting through important some basic decisions in life, but they’re not going to have they’re not going to have the kind of outcomes that we want and they’re not going to have the language development that we want.

It’s important to feature match hearing, vision, motor and sensory capabilities. But, you know, while some devices are very expensive, there are some that are very affordable and available and easy, easy to get. So, it’s much more affordable than it ever has been before.

Patti Singleton

And so, as we know what works, why does the problem persist?

Jacqui Kearns

Well, that’s an important question, too. And it’s complicated. Unfortunately. In a 2018 survey of American Speech and Hearing Association speech language pathologists, 50% of the respondents indicated a lack of opportunity to collaborate as a major barrier. But they also identified a lack of training in AC, assistive technology and little understanding of low incidence populations. So those are the kinds of things that for SLPs and similarly in trained special educators, when a student presents with complex needs that they have not encountered before, they feel less prepared in communication skills.

AC and supporting physical sensory and medical needs. The more complicated the case, the less confident they feel in providing services to that student, as well as having time as the SLPs report to collaborate because that collaboration is essential.

Patti Singleton

So, tell us what training opportunities are available for teachers.

Jacqui Kearns

Right now, we have the echo in AC, which we invite and teachers to bring a case and we’ll help our interdisciplinary team beat out speech vision. Hearing all those people audiology are on our team. We invite teams to bring a case and we will problem solve with them, with them and provide suggestions for them. We also do teaching presentations.

We have a webinar series on communication from everything from peer supports to working with teams directly to either through web or we’ll come to the school to do the set Student Environment Task Tool framework to identify the impacting factors and what might work for that particular student. And we have a core vocabulary webinar. So we have webinar series, we have the Echo, we have online series that’s asynchronous that you can join just by joining HDR learning in their communication area.

And so we have lots of materials and resources available out there. The pandemic hasn’t made this any easier because it’s online, but also teachers have less time, so we’re looking for ways to make it more accessible and easier to get to.

Patti Singleton

And we’ll certainly make sure that all those links are available in the show notes. So, to wrap up, can you give an example of a student with successful communication?

Jacqui Kearns

Well, I have two examples. Maybe One is the young man I was telling you about in in the high school. STUDENT two We were able to get a scanning system for to augment his eye gaze, which already was working. Okay. So we got, we were able and a peer engagement group. So he had peers to work with and he had a new device, the scanning device, and he used a proximity switch, which is called – commonly called – a candy corn switch.

So all he had to do is barely move his head and it would scan for him. And so that worked out pretty well. So that’s a that’s a success story. And then I have a student, a young student who came to and another that I work with actually in another state who came to school in kindergarten with a communication device in his backpack, but he didn’t want to get it out.

And they went through a training that we provided in their state. And we we’ve been coaching that team for three years. We show up to meetings through Zoom and help them problem solve, and he is now in third grade, and he is using his device and he’s doing really, really well. So those are success stories. The dance, the Ohio one is kind of interesting because we’ve mitigated the problem.

It’s not his. It’s likely now that he will leave school with a device because he has ownership of it. We give him his team, gives him choice and control over when it’s used and when it isn’t used, and he will likely leave with it, unfortunately for the high school student will leave with it only to the extent that his caregivers because he’s out of school now, his caregivers prioritize it.

Patti Singleton

Well, exactly. I really appreciate you sitting down with us today, and I’m really hopeful about the additional practices and the training that will start to see some of those research numbers that you shared earlier improve over the years. So, thank you.

Jacqui Kearns

Well, thank you for having me. And I’m really passionate about making sure kids come to school with it and don’t leave without it, because it’s really, really a life changing skill that we all need. Thanks for having me.

https://hdiuky.podbean.com/e/episode-4-communication/

Kentucky Speaks AAC: Find project information and registration for the webinar series, online learning and ECHO training https://hdi.uky.edu/ky-speaks-aac 

Jordyn Zimmerman’s website https://www.jordynzimmerman.com/   

This is Not About Me movie https://thisisnotaboutme.film/  

Abused and Betrayed: Special Series by NPR https://www.npr.org/series/575502633/abused-and-betrayed 

Office of Special Education Programs (OSEP) Dear Colleague Letter https://sites.ed.gov/idea/idea-files/osep-dear-colleague-letter-on-meeting-the-communication-needs-of-students-with-hearing-vision-or-speech-disabilities/  

The State of HDI podcast explores the initiatives and projects at the University of Kentucky Human Development Institute (HDI). This podcast is part of our ongoing work to bring together the efforts of HDI projects and staff and the ever changing state and national landscape of important issues. Contact patti.naber@uky.edu for more information.